open program

Leigh Syndrome Program

An open patient partnership program for Leigh syndrome and related mitochondrial disease communities.

This program is open. You can join now and begin working through its credit steps. You can read every credit step below before deciding what you want to do. Private health details stay in Mito Map.

Maximum program credits 1,550

Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.

Join this programSee how to earn creditsCompare all programs

Why join

Help build a clearer picture of this condition over time.

Members can share selected updates about what changes, what daily life is like, and what questions matter most. Researchers can use approved group-level information to plan better studies. Your detailed records remain private in Mito Map unless you separately agree to an approved use.

You can also use broader resources from Precision Mito and community matching through Mito Match.

Maximum program credits
1,550

Complete all listed milestones

Planned participants
160

A planning goal, not current enrollment

Program details

Leigh Syndrome Program

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

75 credits

Join Leigh and connect readiness source. Credits fill gradually as eligible activity is completed.

Sync

225 credits

Complete Leigh care-readiness summary. Credits fill gradually as eligible activity is completed.

Interact

500 credits

Keep Leigh summaries current. Credits fill gradually as eligible activity is completed.

Sustain

750 credits

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.

Researcher program

Researchers who publish with Alliance data can share in the value they help create.

When a researcher uses consented Alliance data, publishes useful findings, and follows the program's data-use and publication rules, their work can be recognized through a separate Researcher Value Pool.

Researcher value awards are not guaranteed. Eligibility depends on publication status, data-use compliance, program approval, available qualifying value, and applicable law.

Researcher pool stage
pre-revenue

Separate from the patient pool

Researcher goal
$22,500,000

20% of the combined program goal

Strategic researcher range
$8,875,000-$15,500,000

Planning range for future qualifying value

Program share
20%

Share of combined patient and researcher program goals

Current balance
$0

Current funded balance

Qualifying research impact value
$0

Tracked for this program

Program
Leigh Syndrome Program

Credit pathways

Earn up to 1,550 credits in this program.

Start with Step 1 and work through the list at your own pace. Each card shows how many new credits that step adds and what your running total will be. Credits appear after the required activity is completed and checked.

Maximum program credits 1,550

Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.

Step 1
+75credits
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

Leigh Syndrome Program · Step 1

Join Leigh and connect readiness source

+75credits 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

  1. Open My Programs in your dashboard.
  2. Find Leigh Syndrome Program and choose Add program or Join interest list.
  3. 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

Open My ProgramsView this program

Required item 2

Authorize Mito Map or approved summaries for diagnosis, genetics, and baseline-readiness status

Exactly what to do

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. 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

Open Mito Map SyncReview privacy

Required item 3

Keep detailed neurologic, developmental, breathing, and feeding records in Mito Map

Exactly what to do

  1. Open Mito Map through the secure sync page.
  2. Add or update the information named in this requirement: Keep detailed neurologic, developmental, breathing, and feeding records in Mito Map.
  3. 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

Update Mito MapSee what MDA stores

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.

Check my credit progress
Step 2
+225credits
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

Leigh Syndrome Program · Step 2

Complete Leigh care-readiness summary

+225credits 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

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. 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

Open Mito Map SyncReview privacy

Required item 2

Keep labs, imaging, records, and visit details in Mito Map

Exactly what to do

  1. Open Mito Map through the secure sync page.
  2. Add or update the information named in this requirement: Keep labs, imaging, records, and visit details in Mito Map.
  3. 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

Update Mito MapSee what MDA stores

Required item 3

Authorize assistive-device, therapy, and function-summary signals if available

Exactly what to do

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. 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

Open Mito Map SyncReview privacy

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.

Check my credit progress
Step 3
+500credits
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

Leigh Syndrome Program · Step 3

Keep Leigh summaries current

+500credits 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

  1. Open Mito Map and review what has changed since your last update.
  2. Add the requested symptom, function, care, test, treatment, or daily-life updates.
  3. 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

Add or refresh an updateCheck credit progress

Required item 2

Refresh function, episode, hospitalization, therapy, breathing-support, nutrition, and care-use summary signals

Exactly what to do

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. 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

Open Mito Map SyncReview privacy

Required item 3

Authorize therapy, developmental, function, or clinician-assessment summary signals if available

Exactly what to do

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. 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

Open Mito Map SyncReview privacy

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.

Check my credit progress
Step 4
+750credits
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

Leigh Syndrome Program · Step 4

Help prepare Leigh research data

+750credits 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

  1. Open Mito Map and review what has changed since your last update.
  2. Add the requested symptom, function, care, test, treatment, or daily-life updates.
  3. 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

Add or refresh an updateCheck credit progress

Required item 2

Respond to one Leigh research-prep or patient-priority request when invited

Exactly what to do

  1. Open Research Opportunities in your dashboard.
  2. Look for a Leigh Syndrome Program check-in, priorities request, or survey.
  3. 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

Complete available check-insUpdate Mito MapView my contribution

Required item 3

Help review plain-language materials, summary findings, or missing diagnosis information when invited

Exactly what to do

  1. Open Research Opportunities and look for an invitation connected to this program.
  2. Read what MDA is asking you to review or contribute.
  3. 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

Check invitationsView credit ledger

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.

Check my credit progress

When will my credits appear?

MDA adds credits after the activity is complete and its required information can be confirmed. Some steps are confirmed automatically after a Mito Map sync. Surveys, reviews, and other invited activities may need staff review. For disease-specific programs, MDA may also confirm diagnosis or genetic-testing information when it is available.

If a checklist says "if available," you can finish the step even when that information does not exist for you. If a step requires an invitation, wait until MDA offers that activity. Credits record participation; they are not money, ownership, or a promise of payment.

Join this programSync Mito MapReview opportunitiesView my credit ledger

Possible future payments

Credits do not guarantee payment.

This program is currently at the pre-revenue stage. Its patient pool currently holds $0. It has recorded $0 in qualifying revenue and $0 in approved past distributions.

If the program receives qualifying money and approves a Patient Success Distribution, members generally need active enrollment and at least 50 qualifying credits to be considered. Any approved amount would depend on the program rules and each eligible member's credits. Payment is never guaranteed.