One Shot to Live, CNBC Cures, New Research Funding, and More!

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

We’re excited to share several important updates with you this month — including the continued momentum of our One Shot to Live campaign, and a new research grant to Dr. Qinglan Ling at UMass Chan Medical School to support gene therapy research for MT-ATP6-related disease.

We’re also highlighting a busy month for the Leigh Syndrome Global Patient Registry, including a feature by CNBC Cures, the launch of our new AI-powered Registry Assistant, and presentations sharing our registry experience with the broader rare disease community.

You’ll also find information about our new Family Planning & Reproductive Options resource, community fundraising efforts, international collaborations, upcoming Mito Awareness Week activities, and resources that may be of interest to families.

Thank you for being part of this mission and for your continued support of our community.

With gratitude,

The Cure Mito Foundation Team

“Darkness is preparation for light.
Sadness is preparation for joy.
Failure is preparation for success.
But only if you keep going and remain open to what comes next.”

— James Clear —

One Shot to Live

Last month we have officially launched the One Shot to Live — a united campaign to help raise $2.5 million and advance a clinical trial for SURF1 Leigh syndrome.

Thanks to our community for 350+ donations so far and 250+ merch sales.

View campaign and create your own fundraising page HERE.

MT-ATP6 Research Grant

We are thrilled to announce a grant from the The Rare Village Foundation to Dr. Qinglan Ling,, Assistant Professor at UMass Chan Medical School, to advance gene therapy research for individuals with MT-ATP6 m.8993T>G and m.8993T>C mutations.

In July, Dr. Ling will join us for a Zoom meeting with families to share updates on her research and answer questions from the community. Stay tuned for additional details.

A Busy Month for the Registry

Leigh syndrome patient registry is featured by CNBC Cures!

We are honored to have our Leigh Syndrome Global Patient Registry featured by CNBC Cures and thankful for the opportunity to highlight how our community is working hard to advance research, share meaningful insights, and accelerate progress for patients and families.

The article highlights our efforts to always share insights with registry participants and wider community, and our recent initiatives such as a public facing dashboard and an AI-powered registry assistant.

Read the full article HERE.

AI-powered assistant is now here to make registry participation easier!

AI powered assistant is now here to help explain registry questions, guide you through the enrollment process, and answer common questions about the Leigh Syndrome Global Patient Registry.

It works in any language, making it easier for families around the world to participate.

Access it HERE.

We shared our registry experience at the WODC conference!

Sophia gave a talk at the World Orphan Drug Congress in Boston, discussing our approach to building a patient-centered registry and making registry insights always accessible.

The presentation sparked many thoughtful questions from attendees. We are grateful for the opportunity to participate and contribute to the conversation on rare disease registries.

If you or your family is affected by Leigh syndrome, please consider joining the registry.

If you're already enrolled, we recently added 10 new questions about treatment priorities and clinical trial participation, and we would be grateful if you could take a few minutes to update your information.

Find more information HERE.

New family planning resource

Family planning decisions can be especially complex for families affected by mitochondrial disease. To help support families navigating these decisions, Cure Mito has launched a new Family Planning & Reproductive Options resource page.

Please find the page HERE.

This resource is meant to grow and develop. If you have any suggestions on what should be added to this page, please reach out to us!

Thank You for Fundraising

Thank you to the many individuals and families who continue to fundraise in support of Cure Mito. Your dedication, creativity, and commitment are helping to drive research forward and bring hope to our community.

This month we are honored to highlight

AJ's family - AJ will be participating in the Gahanna, Ohio July 4th parade for the second year in a row, helping raise awareness of Leigh syndrome in his community. Thank you, AJ, for being such a wonderful advocate and for helping shine a light on Leigh syndrome!

Zander's family - Zander's family will once again hold an annual golf tournament on September 19th. Thank you to the Marshall family for continued support over the years!

Connecting with the Global Mito Community

Thank you, Kasey, for representing Cure Mito Foundation at the International Mito Patients Annual Meeting 2026 in Angers, France, sharing Cure Mito’s work and discussing opportunities for collaboration across the global mitochondrial disease community.

Mito awareness week coming soon!

Mito Awareness Week is coming soon! Stay tuned for more information about our annual virtual symposium, the upcoming Color for Mito contest, and other opportunities to raise awareness and connect with our community!

If you are interested in speaking or sponsoring please be in touch with us!

Things that might be of interest

In honor of Father's day, The Rare Life podcast featured Lizzy, a mom from our community, sharing her poem The Forgotten Father, about the often unseen experiences of dads raising a child with a rare disease. Listen to the episode HERE.

Playing God podcast episodes (Part 1 and Part 2) from the Johns Hopkins Berman Institute of Bioethics featured a family’s journey after losing a child to mitochondrial disease and their experience using preimplantation genetic testing (PGT) to have two subsequent children.

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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