Empower&Inspire Symposium, Color for Mito, Awareness Day & Research RFP 💚

Dear Friends, Partners, and Supporters of the Cure Mito Foundation,

World Mitochondrial Disease Awareness Week 2025 is coming up September 15–21, and we’re celebrating with a full lineup of events! 🌟

Over 250 people have already registered for our Empower & Inspire Symposium—a global virtual meeting dedicated to Leigh syndrome. Our Color for Mito contest is inviting kids everywhere to get creative and win prizes, and on September 17 we’ll come together for Leigh Syndrome Awareness Day to honor families, remember loved ones, and raise awareness worldwide.

Beyond Awareness Week, we’re also excited to share news of a new SURF1 gene therapy publication and to invite researchers to apply for our in-person research retreat (deadline Nov. 1).

Thank you for being part of our mission and movement.

With gratitude,
The Cure Mito Foundation Team

"Great things happen to those who don't stop believing, trying, learning, and being grateful."

- Roy T. Bennett -

Join us!

Empower and Inspire: 4th Annual Virtual Leigh Syndrome Symposium

Tuesday, September 16, 2025

This year we’re excited to host it on a new, user-friendly conference platform to make the experience even smoother for attendees.

Over 250 already registered—thank you!

Please learn more and register here.

Thank You to Our Sponsors!

Improved AAV9-based gene therapy design for SURF1-related Leigh syndrome with minimal toxicity

In a new publication, Dr. Qinglan Ling, Dr. Steven Gray, and team report an improved AAV9-based gene therapy design that maintains efficacy while minimizing toxicity in preclinical models.

We are proud to have contributed to the funding of this important research, which represents a promising step toward potential treatments for SURF1-related Leigh syndrome.

Read the full paper HERE.

Join the Empower & Inspire Symposium to hear talks and presentations on this important work.

All of the research we fund is made possible by donations from individual supporters like you. Mito Awareness Week is the perfect time to give and help us accelerate progress for children and families affected by Leigh syndrome - please consider making a gift today.

Color for Mito 2025

As we strive to raise awareness about Leigh syndrome and Mitochondrial Disease, we believe that art has the power to inspire, educate, and unite people across the globe.

All kids are invited to participate!

Join our #ColorForMito contest in 3 easy steps—download a page, color it, and share your masterpiece for a chance to win Amazon gift cards ($100, $50, $25)! 🎨💚

Learn more HERE.

Last day to participate is September 14th 2025! Winners to be announced at Leigh Syndrome Symposium

Leigh Syndrome Awareness Day

September 17, 2025

September 17th is Leigh Syndrome Awareness Day: a time to honor families, celebrate resilience, and raise awareness together.

We encourage all groups to support this cause by sharing Leigh syndrome stories, facts, and our animated video—a powerful tool to help others understand the impact of this disease.

Please tag Cure Mito in your posts and link back to our website to help spread awareness and unify our efforts.

Request for Proposals: Leigh Syndrome Research Retreat and Workshop

The Cure Mito Foundation is now accepting proposals from researchers and medical professionals interested in participating in a two-day in-person retreat and workshop focused on advancing research and treatment strategies for Leigh syndrome. Learn more and apply.

Submission Deadline: November 1, 2025

Join Leigh Syndrome Patient Registry

If your loved one has Leigh syndrome - or has passed away from it - please consider joining the world’s largest Leigh Syndrome Global Registry.

All findings are shared back with the community - because your experiences matter.

Learn More

Important registry reminders for patients:

1) Please obtain your Clinical Research ID (CRID) by visiting www.thecrid.org. You will be asked to enter your CRID in the last question on the registry survey.

2) When you enroll in the registry, please ensure you complete both surveys. Without this, we cannot utilize or learn from your data.

3) Please remember to enter genetic mutation whenever available and, if possible, upload the corresponding genetic report.

4) You can enroll or update your registry information HERE. If you are having trouble logging in, please reach out to cords@sanfordhealth.org.

Paper Highlight

How news is shared matters. A new study by Abigail Turnwald and colleagues, titled Parental Experiences of Receiving a Rare Genetic Disease Diagnosis for Their Child on Diagnosis Day, published in the American Journal of Medical Genetics, surveyed 717 parents across 229 rare diseases and highlights what families value most on Diagnosis Day — clear information, compassion, and connection. Read full paper.

Leigh Syndrome Families Checklist

Join the Global Leigh Syndrome Patient Registry

Add your doctors to the medical provider directory

Join our Facebook group

Become a partner family

Volunteer

Email info@curemito.org with your skills and time availability

Join annual Leigh syndrome symposium

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Shop in our Bonfire store

Make a donation

Open a fund in honor or memory of your loved one

Start your own fundraising event

Suggest your own idea or project

Cure Mito Foundation is a 501(c)(3) nonprofit organization founded by parents and driven by a deep commitment to finding a cure for Leigh syndrome and other mitochondrial diseases. Your tax-deductible donation directly supports research focused on advancing treatments and improving the lives of those affected.

For many ways to give, please click here:

https://www.curemito.org/ways-to-give

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