open
All Mitochondrial Disease Community
The broad Alliance community for people living with any mitochondrial disease or suspected mitochondrial condition.
Maximum program credits
4,350
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $0
Goal / planned patient $0
Open now: this cohort can support current study conversations and member joins.
See exactly how to earn up to 4,350 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+100 credits
100 total after this step
Create your basic Alliance account
Complete every required item below for this milestone:
Create your Alliance account Choose the programs you are interested in Connect or authorize Mito Map summaries when you are ready View exact instructions and links →
+100 credits for this step 100 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Create your Alliance account
Exactly what to do
Open the Create Account page. Enter your name and email, create a password, and select the program that fits you best. Submit the form, sign in, and open My Programs if you want to add more programs. How completion is confirmed: Your MDA member account is active and you can open the private dashboard.
Where to complete it
Required item 2
Choose the programs you are interested in
Exactly what to do
Sign in and open My Programs. Review the open and planning programs and add every program that fits you. Confirm each selected program shows Added or Interest recorded. How completion is confirmed: Every selected program appears on your My Programs page. Adding another program does not replace your primary program.
Where to complete it
Required item 3
Connect or authorize Mito Map summaries when you are ready
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+250 credits
350 total after this step
Connect Mito Map readiness summaries
Complete every required item below for this milestone:
Authorize Mito Map or an approved export to share selected summary fields Confirm diagnosis-readiness status through Mito Map or another governed source Keep raw records, labs, symptoms, and genetics in Mito Map unless a specific approved workflow says otherwise View exact instructions and links →
+250 credits for this step 350 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize Mito Map or an approved export to share selected summary fields
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Confirm diagnosis-readiness status through Mito Map or another governed source
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Keep raw records, labs, symptoms, and genetics in Mito Map unless a specific approved workflow says otherwise
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep raw records, labs, symptoms, and genetics in Mito Map unless a specific approved workflow says otherwise. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+500 credits
850 total after this step
Keep readiness summaries current
Complete every required item below for this milestone:
Complete Mito Map or approved check-ins on the requested cadence Refresh Mito Map summary signals such as completeness, freshness, verification, and coverage Review missing or unclear summary categories when invited View exact instructions and links →
+500 credits for this step 850 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete Mito Map or approved check-ins on the requested cadence
Exactly what to do
Open Research Opportunities in your dashboard. Look for a All Mitochondrial Disease Community check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 2
Refresh Mito Map summary signals such as completeness, freshness, verification, and coverage
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Review missing or unclear summary categories when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+1,000 credits
1,850 total after this step
Contribute deeper readiness signals
Complete every required item below for this milestone:
Keep six months of Mito Map or approved summary updates current Complete patient-priority or lived-experience check-ins when asked Share wearable-summary or function-summary signals only through consented Mito Map or approved exports View exact instructions and links →
+1,000 credits for this step 1,850 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six months of Mito Map or approved summary updates current
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Complete patient-priority or lived-experience check-ins when asked
Exactly what to do
Open Research Opportunities in your dashboard. Look for a All Mitochondrial Disease Community check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Share wearable-summary or function-summary signals only through consented Mito Map or approved exports
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 5
+2,500 credits
4,350 total after this step
Help review the program
Complete every required item below for this milestone:
Keep a full year of updates current Help review missing fields or confusing aggregate results when invited Join advisory, listening, protocol-review, or plain-language review work when invited View exact instructions and links →
+2,500 credits for this step 4,350 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep a full year of updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for All Mitochondrial Disease Community.
Where to complete it
Required item 2
Help review missing fields or confusing aggregate results when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Required item 3
Join advisory, listening, protocol-review, or plain-language review work when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $0
Goal / participant $0
Potential participants 4,345
Expected active 2,824
Engagement estimate 65%
With mito 0
Without mito 0
Max credits/person 4,350
Program credit pool 18,900,750
Community goal . Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 4,345 participants x 4,350 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Create your basic Alliance account. Credits fill gradually as eligible activity is completed.
↓
Connect Mito Map readiness summaries. Credits fill gradually as eligible activity is completed.
↓
Contribute deeper readiness signals. Credits fill gradually as eligible activity is completed.
↓
Help review the program. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
open
Leigh Syndrome Program
An open patient partnership program for Leigh syndrome and related mitochondrial disease communities.
Maximum program credits
1,550
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $0
Goal / planned patient $0
Open now: this cohort can support current study conversations and member joins.
See exactly how to earn up to 1,550 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+75 credits
75 total after this step
Join Leigh and connect readiness source
Complete every required item below for this milestone:
Join the Leigh syndrome program as a patient or caregiver Authorize Mito Map or approved summaries for diagnosis, genetics, and baseline-readiness status Keep detailed neurologic, developmental, breathing, and feeding records in Mito Map View exact instructions and links →
+75 credits for this step 75 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Join the Leigh syndrome program as a patient or caregiver
Exactly what to do
Open My Programs in your dashboard. Find Leigh Syndrome Program and choose Add program or Join interest list. Return to My Contribution and confirm the program appears in your credit progress. How completion is confirmed: Your Leigh Syndrome Program membership is active or your planning-program interest is recorded.
Where to complete it
Required item 2
Authorize Mito Map or approved summaries for diagnosis, genetics, and baseline-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Keep detailed neurologic, developmental, breathing, and feeding records in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep detailed neurologic, developmental, breathing, and feeding records in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+225 credits
300 total after this step
Complete Leigh care-readiness summary
Complete every required item below for this milestone:
Authorize summary signals for care-team, therapy, nutrition, respiratory-support, and hospitalization coverage Keep labs, imaging, records, and visit details in Mito Map Authorize assistive-device, therapy, and function-summary signals if available View exact instructions and links →
+225 credits for this step 300 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize summary signals for care-team, therapy, nutrition, respiratory-support, and hospitalization coverage
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Keep labs, imaging, records, and visit details in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep labs, imaging, records, and visit details in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Required item 3
Authorize assistive-device, therapy, and function-summary signals if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+500 credits
800 total after this step
Keep Leigh summaries current
Complete every required item below for this milestone:
Complete Mito Map or approved follow-up updates over three to six months Refresh function, episode, hospitalization, therapy, breathing-support, nutrition, and care-use summary signals Authorize therapy, developmental, function, or clinician-assessment summary signals if available View exact instructions and links →
+500 credits for this step 800 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete Mito Map or approved follow-up updates over three to six months
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for Leigh Syndrome Program.
Where to complete it
Required item 2
Refresh function, episode, hospitalization, therapy, breathing-support, nutrition, and care-use summary signals
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Authorize therapy, developmental, function, or clinician-assessment summary signals if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+750 credits
1,550 total after this step
Help prepare Leigh research data
Complete every required item below for this milestone:
Keep six to twelve months of Leigh updates current Respond to one Leigh research-prep or patient-priority request when invited Help review plain-language materials, summary findings, or missing diagnosis information when invited View exact instructions and links →
+750 credits for this step 1,550 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six to twelve months of Leigh updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for Leigh Syndrome Program.
Where to complete it
Required item 2
Respond to one Leigh research-prep or patient-priority request when invited
Exactly what to do
Open Research Opportunities in your dashboard. Look for a Leigh Syndrome Program check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Help review plain-language materials, summary findings, or missing diagnosis information when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $0
Goal / participant $0
Potential participants 160
Expected active 104
Engagement estimate 65%
Max credits/person 1,550
Program credit pool 248,000
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 160 participants x 1,550 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join Leigh and connect readiness source. Credits fill gradually as eligible activity is completed.
↓
Complete Leigh care-readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep Leigh summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare Leigh research data. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
open
MELAS / m.3243A>G Program
An open patient partnership program for MELAS and m.3243A>G-related mitochondrial disease.
Maximum program credits
1,590
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $0
Goal / planned patient $0
Open now: this cohort can support current study conversations and member joins.
See exactly how to earn up to 1,590 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+90 credits
90 total after this step
Join MELAS and start readiness updates
Complete every required item below for this milestone:
Join the MELAS / m.3243A>G program Complete the first Mito Map or approved readiness update Authorize m.3243A>G diagnosis-readiness summaries if available View exact instructions and links →
+90 credits for this step 90 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Join the MELAS / m.3243A>G program
Exactly what to do
Open My Programs in your dashboard. Find MELAS / m.3243A>G Program and choose Add program or Join interest list. Return to My Contribution and confirm the program appears in your credit progress. How completion is confirmed: Your MELAS / m.3243A>G Program membership is active or your planning-program interest is recorded.
Where to complete it
Required item 2
Complete the first Mito Map or approved readiness update
Exactly what to do
Open Mito Map Sync from your dashboard. Review the information needed for this item: Complete the first Mito Map or approved readiness update. Update or authorize the relevant summary, finish the sync, and check your contribution page after processing. How completion is confirmed: The requested summary category or profile signal appears in the latest approved sync. Raw health details remain in Mito Map.
Where to complete it
Required item 3
Authorize m.3243A>G diagnosis-readiness summaries if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+250 credits
340 total after this step
Complete m.3243A>G readiness summary
Complete every required item below for this milestone:
Authorize Mito Map or approved summaries for genetics, diagnosis, and longitudinal-readiness status Keep detailed symptom, medication, lab, imaging, record, and care-use data in Mito Map Review m.3243A>G summary gaps when invited View exact instructions and links →
+250 credits for this step 340 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize Mito Map or approved summaries for genetics, diagnosis, and longitudinal-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Keep detailed symptom, medication, lab, imaging, record, and care-use data in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep detailed symptom, medication, lab, imaging, record, and care-use data in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Required item 3
Review m.3243A>G summary gaps when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+500 credits
840 total after this step
Keep monthly MELAS summaries current
Complete every required item below for this milestone:
Complete at least three Mito Map or approved monthly updates Refresh symptom-burden, energy, function, lab-coverage, and care-use summary signals Authorize function-testing, wearable-summary, or clinician-note summary signals if available View exact instructions and links →
+500 credits for this step 840 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete at least three Mito Map or approved monthly updates
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for MELAS / m.3243A>G Program.
Where to complete it
Required item 2
Refresh symptom-burden, energy, function, lab-coverage, and care-use summary signals
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Authorize function-testing, wearable-summary, or clinician-note summary signals if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+750 credits
1,590 total after this step
Help prepare MELAS research data
Complete every required item below for this milestone:
Keep six months of monthly MELAS updates current Respond to at least one MELAS research-prep request when invited Help review patient priorities, disease-course information, or missing diagnosis information when invited View exact instructions and links →
+750 credits for this step 1,590 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six months of monthly MELAS updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for MELAS / m.3243A>G Program.
Where to complete it
Required item 2
Respond to at least one MELAS research-prep request when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Required item 3
Help review patient priorities, disease-course information, or missing diagnosis information when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $0
Goal / participant $0
Potential participants 160
Expected active 104
Engagement estimate 65%
Max credits/person 1,590
Program credit pool 254,400
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 160 participants x 1,590 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join MELAS and start readiness updates. Credits fill gradually as eligible activity is completed.
↓
Complete m.3243A>G readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep monthly MELAS summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare MELAS research data. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
open
OPA1 Discovery Program
An open patient partnership program focused on OPA1-related mitochondrial disease.
Maximum program credits
1,150
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $0
Goal / planned patient $0
Open now: this cohort can support current study conversations and member joins.
See exactly how to earn up to 1,150 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+60 credits
60 total after this step
Join OPA1 and start vision updates
Complete every required item below for this milestone:
Join the OPA1 program Complete the first vision, fatigue, and daily-function check-in Confirm consent choices and Mito Map connection status View exact instructions and links →
+60 credits for this step 60 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Join the OPA1 program
Exactly what to do
Open My Programs in your dashboard. Find OPA1 Discovery Program and choose Add program or Join interest list. Return to My Contribution and confirm the program appears in your credit progress. How completion is confirmed: Your OPA1 Discovery Program membership is active or your planning-program interest is recorded.
Where to complete it
Required item 2
Complete the first vision, fatigue, and daily-function check-in
Exactly what to do
Open Research Opportunities in your dashboard. Look for a OPA1 Discovery Program check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Confirm consent choices and Mito Map connection status
Exactly what to do
Open the MDA acknowledgement center and review your current choices. Open Mito Map Sync and confirm whether your summary connection is connected or still needs action. Update any contact or permission choice presented in the secure member workflow, then save it. How completion is confirmed: Your current acknowledgement and connection status are recorded. Private health permissions remain controlled in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+180 credits
240 total after this step
Complete OPA1 readiness summary
Complete every required item below for this milestone:
Authorize Mito Map or approved summaries for diagnosis, vision, and variant-readiness status Keep eye exams, visual acuity, therapy, and related records in Mito Map Review OPA1 summary gaps when invited View exact instructions and links →
+180 credits for this step 240 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize Mito Map or approved summaries for diagnosis, vision, and variant-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Keep eye exams, visual acuity, therapy, and related records in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep eye exams, visual acuity, therapy, and related records in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Required item 3
Review OPA1 summary gaps when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+360 credits
600 total after this step
Keep OPA1 summaries current
Complete every required item below for this milestone:
Complete Mito Map or approved follow-up updates over three to six months Refresh vision, fatigue, function, and care-use summary signals Authorize measured-vision or function-summary signals if available View exact instructions and links →
+360 credits for this step 600 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete Mito Map or approved follow-up updates over three to six months
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for OPA1 Discovery Program.
Where to complete it
Required item 2
Refresh vision, fatigue, function, and care-use summary signals
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Authorize measured-vision or function-summary signals if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+550 credits
1,150 total after this step
Help prepare OPA1 research data
Complete every required item below for this milestone:
Keep six to twelve months of OPA1 updates current Answer OPA1 patient-priority requests when invited Help review OPA1 findings, plain-language materials, or missing diagnosis information when invited View exact instructions and links →
+550 credits for this step 1,150 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six to twelve months of OPA1 updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for OPA1 Discovery Program.
Where to complete it
Required item 2
Answer OPA1 patient-priority requests when invited
Exactly what to do
Open Research Opportunities in your dashboard. Look for a OPA1 Discovery Program check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Help review OPA1 findings, plain-language materials, or missing diagnosis information when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $0
Goal / participant $0
Potential participants 125
Expected active 81
Engagement estimate 65%
Max credits/person 1,150
Program credit pool 143,750
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 125 participants x 1,150 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join OPA1 and start vision updates. Credits fill gradually as eligible activity is completed.
↓
Complete OPA1 readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep OPA1 summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare OPA1 research data. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
open
POLG Discovery Program
A patient partnership program focused on POLG-related mitochondrial disease.
Maximum program credits
1,280
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $0
Goal / planned patient $0
Open now: this cohort can support current study conversations and member joins.
See exactly how to earn up to 1,280 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+80 credits
80 total after this step
Join POLG and confirm readiness source
Complete every required item below for this milestone:
Join the POLG program Connect Mito Map or an approved readiness export Confirm POLG diagnosis-readiness status through governed summary fields View exact instructions and links →
+80 credits for this step 80 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Join the POLG program
Exactly what to do
Open My Programs in your dashboard. Find POLG Discovery Program and choose Add program or Join interest list. Return to My Contribution and confirm the program appears in your credit progress. How completion is confirmed: Your POLG Discovery Program membership is active or your planning-program interest is recorded.
Where to complete it
Required item 2
Connect Mito Map or an approved readiness export
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Confirm POLG diagnosis-readiness status through governed summary fields
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+200 credits
280 total after this step
Complete POLG readiness summary
Complete every required item below for this milestone:
Authorize summary fields for diagnosis, variant, and longitudinal-readiness status Keep detailed symptoms, medications, labs, and records in Mito Map Review POLG summary gaps when invited View exact instructions and links →
+200 credits for this step 280 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize summary fields for diagnosis, variant, and longitudinal-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Keep detailed symptoms, medications, labs, and records in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep detailed symptoms, medications, labs, and records in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Required item 3
Review POLG summary gaps when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+400 credits
680 total after this step
Keep POLG summaries current
Complete every required item below for this milestone:
Complete Mito Map or approved follow-up updates over three to six months Refresh summary signals for longitudinal depth and data coverage Authorize function, mobility, or clinician-score summaries if available View exact instructions and links →
+400 credits for this step 680 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete Mito Map or approved follow-up updates over three to six months
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for POLG Discovery Program.
Where to complete it
Required item 2
Refresh summary signals for longitudinal depth and data coverage
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Authorize function, mobility, or clinician-score summaries if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+600 credits
1,280 total after this step
Help prepare POLG research data
Complete every required item below for this milestone:
Keep six to twelve months of POLG updates current Answer POLG research-prep or patient-priority requests when invited Help fix missing, outdated, or conflicting POLG profile fields View exact instructions and links →
+600 credits for this step 1,280 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six to twelve months of POLG updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for POLG Discovery Program.
Where to complete it
Required item 2
Answer POLG research-prep or patient-priority requests when invited
Exactly what to do
Open Research Opportunities in your dashboard. Look for a POLG Discovery Program check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Help fix missing, outdated, or conflicting POLG profile fields
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $0
Goal / participant $0
Potential participants 125
Expected active 81
Engagement estimate 65%
Max credits/person 1,280
Program credit pool 160,000
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 125 participants x 1,280 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join POLG and confirm readiness source. Credits fill gradually as eligible activity is completed.
↓
Complete POLG readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep POLG summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare POLG research data. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
open
TWNK Discovery Program
An open patient partnership program focused on TWNK-related mitochondrial disease.
Maximum program credits
950
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $0
Goal / planned patient $0
Open now: this cohort can support current study conversations and member joins.
See exactly how to earn up to 950 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+50 credits
50 total after this step
Join TWNK and start priority updates
Complete every required item below for this milestone:
Join the TWNK program Complete the first TWNK patient-priorities check-in Confirm contact preferences, consent choices, and Mito Map connection status View exact instructions and links →
+50 credits for this step 50 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Join the TWNK program
Exactly what to do
Open My Programs in your dashboard. Find TWNK Discovery Program and choose Add program or Join interest list. Return to My Contribution and confirm the program appears in your credit progress. How completion is confirmed: Your TWNK Discovery Program membership is active or your planning-program interest is recorded.
Where to complete it
Required item 2
Complete the first TWNK patient-priorities check-in
Exactly what to do
Open Research Opportunities in your dashboard. Look for a TWNK Discovery Program check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Confirm contact preferences, consent choices, and Mito Map connection status
Exactly what to do
Open the MDA acknowledgement center and review your current choices. Open Mito Map Sync and confirm whether your summary connection is connected or still needs action. Update any contact or permission choice presented in the secure member workflow, then save it. How completion is confirmed: Your current acknowledgement and connection status are recorded. Private health permissions remain controlled in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+150 credits
200 total after this step
Complete TWNK readiness summary
Complete every required item below for this milestone:
Authorize Mito Map or approved summaries for diagnosis-readiness and longitudinal-readiness status Keep clinical records, labs, and therapy notes in Mito Map Review TWNK summary gaps when invited View exact instructions and links →
+150 credits for this step 200 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize Mito Map or approved summaries for diagnosis-readiness and longitudinal-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Keep clinical records, labs, and therapy notes in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep clinical records, labs, and therapy notes in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Required item 3
Review TWNK summary gaps when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+300 credits
500 total after this step
Keep TWNK summaries current
Complete every required item below for this milestone:
Complete Mito Map or approved follow-up updates over three to six months Refresh function, mobility, breathing, and care-use summary signals Authorize function-testing or wearable-summary signals if available View exact instructions and links →
+300 credits for this step 500 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete Mito Map or approved follow-up updates over three to six months
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for TWNK Discovery Program.
Where to complete it
Required item 2
Refresh function, mobility, breathing, and care-use summary signals
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Authorize function-testing or wearable-summary signals if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+450 credits
950 total after this step
Help prepare TWNK research data
Complete every required item below for this milestone:
Keep six months of TWNK updates current Respond to at least one TWNK research-prep request when invited Help review TWNK priorities or missing diagnosis information when invited View exact instructions and links →
+450 credits for this step 950 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six months of TWNK updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for TWNK Discovery Program.
Where to complete it
Required item 2
Respond to at least one TWNK research-prep request when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Required item 3
Help review TWNK priorities or missing diagnosis information when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $0
Goal / participant $0
Potential participants 85
Expected active 55
Engagement estimate 65%
Max credits/person 950
Program credit pool 80,750
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 85 participants x 950 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join TWNK and start priority updates. Credits fill gradually as eligible activity is completed.
↓
Complete TWNK readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep TWNK summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare TWNK research data. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
planning
LHON / Mitochondrial Optic Neuropathy Program
A planning-stage patient partnership program for LHON and related mitochondrial optic neuropathy communities.
Maximum program credits
1,150
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $8,000,000
Goal / planned patient $44,444
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
See exactly how to earn up to 1,150 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+60 credits
60 total after this step
Join LHON and confirm readiness source
Complete every required item below for this milestone:
Join the LHON program interest list Authorize Mito Map or approved summaries for variant or diagnosis-readiness status Keep age-of-onset, eye-involvement, and family-history details in Mito Map View exact instructions and links →
+60 credits for this step 60 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Join the LHON program interest list
Exactly what to do
Open My Programs in your dashboard. Find LHON / Mitochondrial Optic Neuropathy Program and choose Add program or Join interest list. Return to My Contribution and confirm the program appears in your credit progress. How completion is confirmed: Your LHON / Mitochondrial Optic Neuropathy Program membership is active or your planning-program interest is recorded.
Where to complete it
Required item 2
Authorize Mito Map or approved summaries for variant or diagnosis-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Keep age-of-onset, eye-involvement, and family-history details in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep age-of-onset, eye-involvement, and family-history details in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+180 credits
240 total after this step
Complete optic neuropathy readiness summary
Complete every required item below for this milestone:
Authorize summary signals for vision testing, neuro-ophthalmology records, and treatment-history coverage Keep detailed hearing, neurologic, cardiac, and daily-function information in Mito Map Review LHON summary gaps when invited View exact instructions and links →
+180 credits for this step 240 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize summary signals for vision testing, neuro-ophthalmology records, and treatment-history coverage
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Keep detailed hearing, neurologic, cardiac, and daily-function information in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep detailed hearing, neurologic, cardiac, and daily-function information in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Required item 3
Review LHON summary gaps when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+360 credits
600 total after this step
Keep LHON summaries current
Complete every required item below for this milestone:
Complete Mito Map or approved follow-up updates over three to six months Refresh vision, function, care-use, treatment, and assistive-technology summary signals Authorize visual-acuity, OCT, field-testing, or function-summary signals if available View exact instructions and links →
+360 credits for this step 600 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete Mito Map or approved follow-up updates over three to six months
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for LHON / Mitochondrial Optic Neuropathy Program.
Where to complete it
Required item 2
Refresh vision, function, care-use, treatment, and assistive-technology summary signals
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Authorize visual-acuity, OCT, field-testing, or function-summary signals if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+550 credits
1,150 total after this step
Help prepare LHON research data
Complete every required item below for this milestone:
Keep six to twelve months of LHON updates current Answer patient-priority or research requests when invited Help review plain-language findings or missing vision data when invited View exact instructions and links →
+550 credits for this step 1,150 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six to twelve months of LHON updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for LHON / Mitochondrial Optic Neuropathy Program.
Where to complete it
Required item 2
Answer patient-priority or research requests when invited
Exactly what to do
Open Research Opportunities in your dashboard. Look for a LHON / Mitochondrial Optic Neuropathy Program check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Help review plain-language findings or missing vision data when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $8,000,000
Goal / participant $44,444
Potential participants 180
Expected active 117
Engagement estimate 65%
Max credits/person 1,150
Program credit pool 207,000
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 180 participants x 1,150 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join LHON and confirm readiness source. Credits fill gradually as eligible activity is completed.
↓
Complete optic neuropathy readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep LHON summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare LHON research data. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
planning
m.3243A>G Multisystem / MIDD Program
A planning-stage program for people with m.3243A>G multisystem disease, including MIDD, hearing, cardiac, renal, muscle, and neurologic manifestations beyond classic MELAS.
Maximum program credits
1,590
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $14,000,000
Goal / planned patient $58,333
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
See exactly how to earn up to 1,590 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+90 credits
90 total after this step
Join m.3243A>G multisystem program
Complete every required item below for this milestone:
Join the m.3243A>G multisystem program interest list Authorize Mito Map or approved summaries for m.3243A>G diagnosis-readiness status Keep detailed multisystem feature records in Mito Map View exact instructions and links →
+90 credits for this step 90 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Join the m.3243A>G multisystem program interest list
Exactly what to do
Open My Programs in your dashboard. Find m.3243A>G Multisystem / MIDD Program and choose Add program or Join interest list. Return to My Contribution and confirm the program appears in your credit progress. How completion is confirmed: Your m.3243A>G Multisystem / MIDD Program membership is active or your planning-program interest is recorded.
Where to complete it
Required item 2
Authorize Mito Map or approved summaries for m.3243A>G diagnosis-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Keep detailed multisystem feature records in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep detailed multisystem feature records in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+250 credits
340 total after this step
Complete m.3243A>G multisystem readiness summary
Complete every required item below for this milestone:
Authorize summary signals for genetics, diagnosis, and longitudinal-readiness status Keep detailed hearing, diabetes, cardiac, renal, neurologic, eye, GI, lab, record, and care-use data in Mito Map Review m.3243A>G summary gaps when invited View exact instructions and links →
+250 credits for this step 340 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize summary signals for genetics, diagnosis, and longitudinal-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Keep detailed hearing, diabetes, cardiac, renal, neurologic, eye, GI, lab, record, and care-use data in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep detailed hearing, diabetes, cardiac, renal, neurologic, eye, GI, lab, record, and care-use data in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Required item 3
Review m.3243A>G summary gaps when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+500 credits
840 total after this step
Keep m.3243A>G summaries current
Complete every required item below for this milestone:
Complete Mito Map or approved follow-up updates over six months Refresh symptom-burden, energy, function, lab-coverage, medication, hearing, diabetes, and care-use summary signals Authorize function-testing, wearable-summary, or clinician-note summary signals if available View exact instructions and links →
+500 credits for this step 840 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete Mito Map or approved follow-up updates over six months
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for m.3243A>G Multisystem / MIDD Program.
Where to complete it
Required item 2
Refresh symptom-burden, energy, function, lab-coverage, medication, hearing, diabetes, and care-use summary signals
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Authorize function-testing, wearable-summary, or clinician-note summary signals if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+750 credits
1,590 total after this step
Help prepare m.3243A>G research data
Complete every required item below for this milestone:
Keep six to twelve months of multisystem updates current Respond to one research-prep or patient-priority request when invited Help review disease-course information, priorities, or missing diagnosis details when invited View exact instructions and links →
+750 credits for this step 1,590 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six to twelve months of multisystem updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for m.3243A>G Multisystem / MIDD Program.
Where to complete it
Required item 2
Respond to one research-prep or patient-priority request when invited
Exactly what to do
Open Research Opportunities in your dashboard. Look for a m.3243A>G Multisystem / MIDD Program check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Help review disease-course information, priorities, or missing diagnosis details when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $14,000,000
Goal / participant $58,333
Potential participants 240
Expected active 156
Engagement estimate 65%
Max credits/person 1,590
Program credit pool 381,600
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 240 participants x 1,590 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join m.3243A>G multisystem program. Credits fill gradually as eligible activity is completed.
↓
Complete m.3243A>G multisystem readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep m.3243A>G summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare m.3243A>G research data. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
planning
MERRF / m.8344A>G Program
A planning-stage program for MERRF, m.8344A>G, and related myoclonic epilepsy mitochondrial disease communities.
Maximum program credits
1,350
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $5,000,000
Goal / planned patient $55,556
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
See exactly how to earn up to 1,350 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+70 credits
70 total after this step
Join MERRF and confirm readiness source
Complete every required item below for this milestone:
Join the MERRF / m.8344A>G program interest list Authorize Mito Map or approved summaries for genetic or clinical diagnosis-readiness status Keep detailed symptom and phenotype records in Mito Map View exact instructions and links →
+70 credits for this step 70 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Join the MERRF / m.8344A>G program interest list
Exactly what to do
Open My Programs in your dashboard. Find MERRF / m.8344A>G Program and choose Add program or Join interest list. Return to My Contribution and confirm the program appears in your credit progress. How completion is confirmed: Your MERRF / m.8344A>G Program membership is active or your planning-program interest is recorded.
Where to complete it
Required item 2
Authorize Mito Map or approved summaries for genetic or clinical diagnosis-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Keep detailed symptom and phenotype records in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep detailed symptom and phenotype records in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+210 credits
280 total after this step
Complete MERRF readiness summary
Complete every required item below for this milestone:
Authorize summary signals for neurologic-history, seizure-care, medication, and care-team coverage Keep labs, imaging, EEG, biopsy, and clinical records in Mito Map Review MERRF phenotype and variant summary gaps when invited View exact instructions and links →
+210 credits for this step 280 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize summary signals for neurologic-history, seizure-care, medication, and care-team coverage
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Keep labs, imaging, EEG, biopsy, and clinical records in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep labs, imaging, EEG, biopsy, and clinical records in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Required item 3
Review MERRF phenotype and variant summary gaps when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+420 credits
700 total after this step
Keep MERRF summaries current
Complete every required item below for this milestone:
Complete Mito Map or approved follow-up updates over three to six months Refresh seizure, myoclonus, function, hearing, fatigue, medication, and care-use summary signals Authorize clinician-score, therapy-note, or wearable-summary signals if available View exact instructions and links →
+420 credits for this step 700 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete Mito Map or approved follow-up updates over three to six months
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for MERRF / m.8344A>G Program.
Where to complete it
Required item 2
Refresh seizure, myoclonus, function, hearing, fatigue, medication, and care-use summary signals
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Authorize clinician-score, therapy-note, or wearable-summary signals if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+650 credits
1,350 total after this step
Help prepare MERRF research data
Complete every required item below for this milestone:
Keep six to twelve months of MERRF updates current Respond to one MERRF patient-priority or research-prep request when invited Help review missing diagnosis, seizure, or function information when invited View exact instructions and links →
+650 credits for this step 1,350 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six to twelve months of MERRF updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for MERRF / m.8344A>G Program.
Where to complete it
Required item 2
Respond to one MERRF patient-priority or research-prep request when invited
Exactly what to do
Open Research Opportunities in your dashboard. Look for a MERRF / m.8344A>G Program check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Help review missing diagnosis, seizure, or function information when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $5,000,000
Goal / participant $55,556
Potential participants 90
Expected active 59
Engagement estimate 65%
Max credits/person 1,350
Program credit pool 121,500
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 90 participants x 1,350 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join MERRF and confirm readiness source. Credits fill gradually as eligible activity is completed.
↓
Complete MERRF readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep MERRF summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare MERRF research data. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
planning
MT-ATP6 / NARP / Leigh Spectrum Program
A planning-stage program for MT-ATP6, NARP, and related Leigh spectrum mitochondrial disease communities.
Maximum program credits
1,550
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $6,000,000
Goal / planned patient $60,000
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
See exactly how to earn up to 1,550 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+75 credits
75 total after this step
Join MT-ATP6 and NARP spectrum program
Complete every required item below for this milestone:
Join the MT-ATP6 / NARP / Leigh spectrum program interest list Authorize Mito Map or approved summaries for variant and diagnosis-readiness status Keep detailed neurologic, vision, neuropathy, ataxia, developmental, and family-history records in Mito Map View exact instructions and links →
+75 credits for this step 75 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Join the MT-ATP6 / NARP / Leigh spectrum program interest list
Exactly what to do
Open My Programs in your dashboard. Find MT-ATP6 / NARP / Leigh Spectrum Program and choose Add program or Join interest list. Return to My Contribution and confirm the program appears in your credit progress. How completion is confirmed: Your MT-ATP6 / NARP / Leigh Spectrum Program membership is active or your planning-program interest is recorded.
Where to complete it
Required item 2
Authorize Mito Map or approved summaries for variant and diagnosis-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Keep detailed neurologic, vision, neuropathy, ataxia, developmental, and family-history records in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep detailed neurologic, vision, neuropathy, ataxia, developmental, and family-history records in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+225 credits
300 total after this step
Complete MT-ATP6 spectrum readiness summary
Complete every required item below for this milestone:
Authorize summary signals for genetic-testing, heteroplasmy, diagnosis, and care-team coverage Keep neurologic, retinal, neuropathy, movement, respiratory, cardiac, feeding, and developmental details in Mito Map Review MT-ATP6 summary gaps when invited View exact instructions and links →
+225 credits for this step 300 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize summary signals for genetic-testing, heteroplasmy, diagnosis, and care-team coverage
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Keep neurologic, retinal, neuropathy, movement, respiratory, cardiac, feeding, and developmental details in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep neurologic, retinal, neuropathy, movement, respiratory, cardiac, feeding, and developmental details in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Required item 3
Review MT-ATP6 summary gaps when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+500 credits
800 total after this step
Keep MT-ATP6 summaries current
Complete every required item below for this milestone:
Complete Mito Map or approved follow-up updates over three to six months Refresh function, episode, therapy, breathing-support, nutrition, medication, and care-use summary signals Authorize therapy, developmental, function, vision, or clinician-assessment summary signals if available View exact instructions and links →
+500 credits for this step 800 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete Mito Map or approved follow-up updates over three to six months
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for MT-ATP6 / NARP / Leigh Spectrum Program.
Where to complete it
Required item 2
Refresh function, episode, therapy, breathing-support, nutrition, medication, and care-use summary signals
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Authorize therapy, developmental, function, vision, or clinician-assessment summary signals if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+750 credits
1,550 total after this step
Help prepare MT-ATP6 research data
Complete every required item below for this milestone:
Keep six to twelve months of MT-ATP6 spectrum updates current Respond to one research-prep or patient-priority request when invited Help review plain-language findings or missing variant and function information when invited View exact instructions and links →
+750 credits for this step 1,550 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six to twelve months of MT-ATP6 spectrum updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for MT-ATP6 / NARP / Leigh Spectrum Program.
Where to complete it
Required item 2
Respond to one research-prep or patient-priority request when invited
Exactly what to do
Open Research Opportunities in your dashboard. Look for a MT-ATP6 / NARP / Leigh Spectrum Program check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Help review plain-language findings or missing variant and function information when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $6,000,000
Goal / participant $60,000
Potential participants 100
Expected active 65
Engagement estimate 65%
Max credits/person 1,550
Program credit pool 155,000
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 100 participants x 1,550 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join MT-ATP6 and NARP spectrum program. Credits fill gradually as eligible activity is completed.
↓
Complete MT-ATP6 spectrum readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep MT-ATP6 summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare MT-ATP6 research data. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
planning
Single Large-Scale mtDNA Deletion Program
A planning-stage program for Kearns-Sayre, CPEO/CPEO-plus, Pearson syndrome, and related single large-scale mtDNA deletion syndromes.
Maximum program credits
1,550
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Patient value goal $7,000,000
Goal / planned patient $58,333
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
See exactly how to earn up to 1,550 credits
Work through these milestones in order. Each amount is added after every required item in that step is completed and the supporting activity is synced, accepted, or reviewed.
Step 1
+75 credits
75 total after this step
Join mtDNA deletion program
Complete every required item below for this milestone:
Join the single large-scale mtDNA deletion program interest list Authorize Mito Map or approved summaries for diagnosis-readiness status Keep genetic testing and deletion details in Mito Map View exact instructions and links →
+75 credits for this step 75 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Join the single large-scale mtDNA deletion program interest list
Exactly what to do
Open My Programs in your dashboard. Find Single Large-Scale mtDNA Deletion Program and choose Add program or Join interest list. Return to My Contribution and confirm the program appears in your credit progress. How completion is confirmed: Your Single Large-Scale mtDNA Deletion Program membership is active or your planning-program interest is recorded.
Where to complete it
Required item 2
Authorize Mito Map or approved summaries for diagnosis-readiness status
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Keep genetic testing and deletion details in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep genetic testing and deletion details in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 2
+225 credits
300 total after this step
Complete deletion syndrome readiness summary
Complete every required item below for this milestone:
Authorize summary signals for eye, vision, cardiac, endocrine, blood, muscle, and neurologic coverage Keep genetic reports, ECG, eye exams, labs, imaging, and biopsy details in Mito Map Review deletion-syndrome summary gaps when invited View exact instructions and links →
+225 credits for this step 300 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Authorize summary signals for eye, vision, cardiac, endocrine, blood, muscle, and neurologic coverage
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 2
Keep genetic reports, ECG, eye exams, labs, imaging, and biopsy details in Mito Map
Exactly what to do
Open Mito Map through the secure sync page. Add or update the information named in this requirement: Keep genetic reports, ECG, eye exams, labs, imaging, and biopsy details in Mito Map. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files. How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.
Where to complete it
Required item 3
Review deletion-syndrome summary gaps when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 3
+500 credits
800 total after this step
Keep deletion syndrome summaries current
Complete every required item below for this milestone:
Complete Mito Map or approved follow-up updates over three to six months Refresh function, vision, cardiac, endocrine, fatigue, medication, and care-use summary signals Authorize clinician-measure or patient-reported-function summary signals if available View exact instructions and links →
+500 credits for this step 800 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Complete Mito Map or approved follow-up updates over three to six months
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for Single Large-Scale mtDNA Deletion Program.
Where to complete it
Required item 2
Refresh function, vision, cardiac, endocrine, fatigue, medication, and care-use summary signals
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Required item 3
Authorize clinician-measure or patient-reported-function summary signals if available
Exactly what to do
Open Mito Map Sync from your member dashboard. Connect or refresh Mito Map and review the summary categories you are being asked to authorize. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes. How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Step 4
+750 credits
1,550 total after this step
Help prepare deletion syndrome research data
Complete every required item below for this milestone:
Keep six to twelve months of updates current Respond to one research-prep or patient-priority request when invited Help review plain-language materials or missing multisystem history when invited View exact instructions and links →
+750 credits for this step 1,550 total credits after this step
Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.
Required item 1
Keep six to twelve months of updates current
Exactly what to do
Open Mito Map and review what has changed since your last update. Add the requested symptom, function, care, test, treatment, or daily-life updates. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update. How completion is confirmed: Your authorized summary shows the required update period and recent activity for Single Large-Scale mtDNA Deletion Program.
Where to complete it
Required item 2
Respond to one research-prep or patient-priority request when invited
Exactly what to do
Open Research Opportunities in your dashboard. Look for a Single Large-Scale mtDNA Deletion Program check-in, priorities request, or survey. Read the purpose and privacy details, complete every required question, and submit your response. How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.
Where to complete it
Required item 3
Help review plain-language materials or missing multisystem history when invited
Exactly what to do
Open Research Opportunities and look for an invitation connected to this program. Read what MDA is asking you to review or contribute. Choose whether to participate, complete the requested activity, and submit it before the stated deadline. How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.
Where to complete it
Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.
Optional items marked “if available” do not block the milestone when that information does not exist. An invitation-based item can be completed only after MDA offers that activity; it is not required before an invitation exists.
Multi-year program goal $7,000,000
Goal / participant $58,333
Potential participants 120
Expected active 78
Engagement estimate 65%
Max credits/person 1,550
Program credit pool 186,000
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 120 participants x 1,550 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join mtDNA deletion program. Credits fill gradually as eligible activity is completed.
↓
Complete deletion syndrome readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep deletion syndrome summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare deletion syndrome research data. Credits fill gradually as eligible activity is completed.
Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.
Researcher goal $22,500,000
Program share 20%
Conservative $2,625,000
Strategic $8,875,000-$15,500,000
Program type Researcher
Impact focus Alliance data
Designed to reward compliant research impact
Goal: $22,500,000 for researcher-created valueShare: 20% of the combined program goal
Open Research Impact Program
Program goals are intentionally larger than expected active participation because some members may not complete baseline evidence, consent steps, or longitudinal updates. These figures are multi-year planning estimates for potential qualifying value across data partnerships, recruitment, natural history, publication work, and related program activity. They are not annual revenue forecasts, expected funding, payment promises, or guaranteed distribution amounts.
