It's Rare Disease month! Also C-path and Patient Registry Updates, Community News, and More!

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

Welcome to our February 2025 newsletter! It's Rare Disease Month, and we are excited to share the many ways you can get involved.

We are also sharing with you updates on our work with Mito taskforce with C-Path, important patient registry reminders, as well as highlights from our latest initiatives, key community updates, and exciting news from our families and partners.

Warm regards,
The Cure Mito team

"The struggle you’re in today is developing the strength you need for tomorrow. Don’t give up."

- Robert Tew -

Rare Disease Day is on February 28th!

Please follow us, share, donate, join the registry, and join our efforts to change the future for kids affected by Leigh syndrome and mitochondrial diseases! For more ideas on how to be involved please visit our website!

Donate $28 or more till end of February and get a chance to win one of five adorable handmade Cure Mito monkeys! 🐵💚 Winners announced on Rare Disease Day, Feb 28. Let’s raise awareness together!

Mitochondrial and Inherited Metabolic Taskforce Update

We continue to be actively engaged with the Mitochondrial and Inherited Metabolic Disease Taskforce led by Critical Path Institute and are in the process of developing a white paper that will outline recommendations for data collection across all mitochondrial diseases.

We welcome industry members to connect with us and explore opportunities to participate in the task force.

Additionally, if you are interested in sharing any PMD data with C-Path please contact us.

Learn more HERE.

Leigh Syndrome Families - Please Join the Patient Registry and Be Counted

Our registry is the largest Leigh Syndrome patient registry in the world, offering accessible and available data, with results consistently reported back to the community.

Joining the registry involves responding to two brief surveys, taking no longer than 30 minutes.

Important registry reminders for patients:

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

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

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

Learn More

Welcome, Dr. Brestoff to our Medical and Scientific advisory board!

We are thrilled to announce Dr. Jon Brestoff's addition to our Medical & Scientific Advisory Board! Dr. Brestoff is renowned for his pioneering work in mitochondrial transfer, especially in treating metabolic diseases like Leigh Syndrome. Following Dr. Brestoff incredible talk at Leigh syndrome symposium in September and recent Cure Mito webinar with families, we knew we had to have him on our team!

Boggs Family Story Featured on El Paso Sports Network!

Our co-founders Courtney and Jacob Boggs were featured on El Paso Sports Nework, where they shared the story of their family and Cure Mito Foundation. Please listen HERE.

Will Woleben Models Again for JCPenney's Adaptive Line!

Congratulations to Will Woleben, son of our Co-Founder and Executive Director, Kasey Woleben, on once again modeling for JCPenney's adaptive clothing line! Thank you JCPenney for inclusion of children like Will. Check it out HERE.

Congratulations, Saol Therapeutics!

Exciting news from Saol Therapeutics! The FDA has officially accepted for review the New Drug Application (NDA) for SL1009, Sodium Dichloroacetate Oral Solution (DCA), designed to treat Pyruvate Dehydrogenase Complex Deficiency (PDCD), a rare pediatric mitochondrial disease. The FDA has targeted May 27, 2025, for its decision under the PDUFA.
Learn more in the PRESS RELEASE.

Paper Highlight

Patient involvement in medical research, spanning prevention to clinical trial design, is replacing outdated tokenistic paradigms with inclusive models like patient experts, who work closely with researchers and clinicians. Read full paper, "Inclusion in neurological research: empowering people living with neurological diseases" by Ferretti, M.T., Uccheddu, M.B., Flanagan, R. et al. HERE.

Find more papers that maybe of interest to our community HERE.

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

Share your story

Email info@curemito.org

Share our printable flyers with your medical team, family and friends

Follow us on social media

Facebook, LinkedIn, X/Twitter, Instagram

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 led by parents who volunteer their time to search for a cure. 100% of your donations are tax-deductible and will go directly to research dedicated to mitochondrial diseases.

For many ways to give, please click here:

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

Donate Now

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