Cure MITO Foundation

Everyone can share this !!!

As we reflect on Father's Day, we'd like to share a meaningful episode of The Rare Life podcast featuring Lizzy, a mom from our community, who shares her poem The Forgotten Father about the often unseen experiences of dads raising a child with a rare disease. Please listen to the episode here:
https://podcasts.apple.com/us/podcast/the-forgotten-fathers-to-the-dads-who-hold-it/id1511352065?i=1000773293726

We are thrilled to announce a grant from 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. We are excited to support this important work and look forward to following its progress.

We are honored to have our Leigh Syndrome Global Patient Registry featured by CNBC Cures.

Thank you to Brad Quick and CNBC Cures for highlighting our efforts to build a registry that provides meaningful insights back to patients and families, while helping researchers and industry better understand Leigh syndrome. The article also highlights new initiatives such as our public registry dashboard and AI-powered Registry Assistant, designed to make participation easier and more valuable for our community.

If your family is affected by Leigh syndrome, we encourage you to join the registry or update your information. If you are a researcher or industry representative, we welcome opportunities to collaborate and accelerate progress for the Leigh syndrome community.

Read the full story:
https://link.cnbc.com/public/46229524

Need a reason to join the Leigh Syndrome Global Registry—or update your information? Here are a few.

Most importantly, every person counts. Your participation helps ensure that the experiences and priorities of our community are heard, and Cure Mito is committed to sharing findings back so families are never left wondering what was learned from the data.

As a thank you, the first 20 people to enroll or update their information (including the new questions) will receive a $25 Visa gift card.

Meet Ryker—a kind, active little boy living with SURF1 Leigh syndrome. Ryker has very few symptoms so far and is a pretty typical almost 4-year-old who loves being outside, riding his bike, and swimming. 💙 Learn more about his journey:
https://www.curemito.org/stories-ryker/

📣 New Resource for Families: Leigh Syndrome Registry AI Assistant

We’re excited to introduce a new AI assistant that can 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.

🔗 Try it here: tinyurl.com/lsregistryhelp

Already enrolled? We recently added 10 new questions about priorities related to new treatments and clinical trial participation. We would be very grateful if you could take a few minutes to log in and update your responses.