I don't want people to pity our family. I want them to look at our battle and see how hard we're fighting for change.
Alyssa
,
mother and advocate of Lincoln Zachary Dickerson
I don't want people to pity our family. I want them to look at our battle and see how hard we're fighting for change.
Alyssa
,
mother and advocate of Lincoln Zachary Dickerson
To create awareness about genetic testing for people suffering with rare diseases so that a cure through gene therapy can be accelerated.
Raghavendran
,
Leigh syndrome Ambassador
Finally, patients have power! AllStripes can analyze and share data within our community through their simple yet powerful platform.
Kasey
,
mother of a child with SURF1-associated Leigh syndrome
AllStripes' commitment to sharing de-identified data insights with the Leigh syndrome community will greatly improve the understanding of this disease and help to advance research.
Lindsey
,
mom to Jaxson, who is impacted by Leigh syndrome

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Research participants
needed
Help reach this goal to jumpstart the research program! More participants can join at any time to make research even stronger.
The first recruitment goal has been met! But we encourage more participants to join to make this research as strong as possible.

Be part of the AllStripes program for

Leigh syndrome

Your experience with
Leigh syndrome
is important and can help researchers advance treatments for your community.
By joining AllStripes, you can contribute your de-identified medical records to multiple research efforts for
Leigh syndrome
without leaving home. We do the work to collect your information, and you’ll receive all your records in your secure account, at no cost.

Your experience with Leigh syndrome is important and can help researchers advance treatments for your community.

By contributing your, or your child’s, de-identified records, you will help grow knowledge about Leigh syndrome in multiple research efforts without leaving home, the first of which will support work towards a potential gene therapy for SURF1 Leigh syndrome with Taysha Gene Therapies.

Our partners for this research program

Learn more about

Leigh syndrome

Leigh syndrome is a neurometabolic condition caused by pathogenic variants, or genetic differences, in one of more than 75 genes. These genes all play important roles in the creation of mitochondria, or the powerhouses of the cell. Mitochondria make the energy the body needs to function properly, including actions like lifting your arms or inflating your lungs with each breath.

Benefits to joining

Power to the patients

Benefits to joining

Have a voice in research

Your de-identified records, and your input through surveys, can help guide treatment research.

Access your medical records

We collect your records, at no cost, in your secure account. View doctors’ notes and your care journey.

Learn from your community

Receive updates on your research impact.

How it works

1. Sign up

In just 15-20 minutes, create your private account, authorize us to get to work on your behalf, and share the names of your health facilities. No appointments, no uploads.

2. We get to work

The AllStripes team does the work to collect your records, at no cost, in your secure account. Access doctors’ notes you may have never seen and view your care journey.

3. Power research

Our team de-identifies your records by removing information like name and address, and analyzes your community’s data to help jumpstart or speed up new treatment research.

AllStripes FAQs for patients and caregivers

Privacy and data ownership

AllStripes Research is approved and monitored by an independent ethics review board called WIRB (Western Institutional Review Board). WIRB is a group of people who review research studies to protect the rights and welfare of human subjects. They provide in-depth regulatory expertise to support development of research protocols and documentation. Read more.
The Taysha Gene Therapies (“Taysha”) name and logo are trademarks of Taysha. Use, reproduction, copying, or redistribution of these trademarks, without the written permission of Taysha is prohibited.

Access your records, drive research