Dear Friends, Partners, and Followers of the Cure Mito Foundation,
Welcome to our March 2025 newsletter! In this edition, we're excited to unveil a variety of new developments and initiatives: Explore our latest animated exploration of Leigh syndrome, a long-awaited project now complete! Check out our new resource tailored for researchers. Siblings of kids with Leigh syndrome are invited to a special session just for them Learn about our new biorepository initiative, to include all mutations of Leigh syndrome. Celebrate with us as we announce the winners of our Rare Disease Month Mito Monkey contest! Plus, more updates and insights!
Warm regards,
The Cure Mito team
"Words may inspire, but only action creates change."
- Simon Sinek - |
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Our new animated video about Leigh syndrome is out! |
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We're excited to release our new animated video about Leigh Syndrome. Please watch, enjoy, and share to help spread the word and support our community!
Thank you to GFL Environmental Inc. for their generous grant to support this video, to the team at Science Animated for their fantastic production work, and to all who support and inspire us! |
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Attention, researchers! Explore our new resource featuring a collection of animal models, fibroblasts, and other essential biosamples. Learn more HERE. If you know of additional resources to add to this page or have any questions or comments, please contact us! |
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New! Sibling session March 30th, 4 PM Central Time |
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Siblings of kids affected by Leigh syndrome are invited to join a session just for them on March 30th, 4 pm Central Time.
This is an opportunity to connect, share experiences, and provide mutual support in navigating the challenges that come with having a sibling affected by Leigh syndrome. |
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The session is facilitated by Clare Logan. Clare is a magna cum laude graduate from NYU with a degree in Psychology. Currently the administrative coordinator at Square One Psychology, Clare co-facilitates group therapy for children with anxiety. Her personal experience with her mother's MS diagnosis deeply informs her understanding of the familial impact of medical conditions. Clare is actively applying her insights in our sibling support group as she pursues a master’s in Human Genetics and Genetic Counseling.
Please register HERE, in order for this session to be beneficial to the children, a maximum of 10 participants are allowed. |
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Biorepository Partnership with COMBINEDBrain |
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We are excited to share that we have partnered with COMBINEDBrain to collect blood samples from patients with all mutations of Leigh syndrome. Please stay tuned for follow-up information on how to participate! |
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Leigh Syndrome Families - Please Join the Patient Registry and Be Counted |
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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. |
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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.
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Thank you for your support this Rare Disease Month! |
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Huge congratulations to our Mito Monkey winners: Rita Naman, Janet Ymker, Michael Edwards, Diana Lezanic, and Victoria Helman! A heartfelt thank you to everyone who supported us during Rare Disease Month and throughout the year. |
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Join us at the Rare Advocacy Exchange |
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Kasey will participate in a panel discussion at the Rare Advocacy Exchange hosted by Global Genes, titled: Thinking Outside of Your In Box: Innovative Fundraising Opportunities
Learn more about the Rare Advocacy Exchange and register HERE. |
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Meet us at the World Orphan Drug Congress in Boston |
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Sophia will conduct a workshop: Patient registries: A practical approach for patient foundations
Our board member, Bill Suzor will also attend.
If you are attending please connect with us! |
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Mitochondrial DNA diseases present unique challenges in genetic counseling, influencing options like IVF, prenatal diagnosis, and emerging techniques like gene editing. New paper "Genetic and reproductive strategies to prevent mitochondrial diseases" by Dr. Björn Heindryckx et al. emphasizes the need for personalized approaches and careful consideration of potential benefits and risks. Read full paper HERE.
Mitochondrial diseases are complex and largely untreatable due to their effects on vital organs like the brain and heart, and challenges in mitochondrial DNA engineering. However, human induced pluripotent stem cells (iPSCs) offer new hope. Increasingly used in research, iPSCs help create models to study these diseases and explore treatment options in a way that's specific to the patient and tissue affected. Recent advances in iPSC-derived models, including both 2D cells and 3D organoids, are paving the way for breakthroughs in treatments and understanding of mitochondrial diseases. Learn more in the new paper, "iPSC models of mitochondrial diseases", by Dr. Alessandro Prigione and Dr. Sonja Heiduschka HERE.
Philanthropic drug development (PDD) bridges innovation gaps in treatments for rare and underserved diseases by addressing cost and timeline challenges that deter investments. By fostering collaborations between patient organizations, pharmaceutical companies, and stakeholders, PDD integrates patient perspectives, enabling exploration of commercially unprofitable areas and enhancing patient-centered innovations. Learn more in the paper: "Philanthropic Drug Development: Understanding Its Importance, Mechanisms, and Future Prospects" by Marc Reichel et al. Read paper HERE.
Find more papers that maybe of interest to our community HERE. |
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Leigh Syndrome Families Checklist
Volunteer
Share your story Email info@curemito.org
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Start your own fundraising event
Suggest your own idea or project |
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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: |
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