November Newsletter
November is National Family Caregivers Month
November is National Family Caregivers Month, and we’re taking this opportunity to recognize the incredible caregivers in our mito community who care for and advocate for their loved ones every day. Throughout the month, UMDF will be highlighting caregiver stories and shining a light on the important role caregivers play in supporting those affected by mitochondrial disease.
Whether you’re interested in sharing your story, connecting with others who understand your journey, or joining one of our free weekly virtual support groups, there are many ways to get involved and find support through UMDF. Click here to explore our virtual support meetings and find one to join.
Patients, Caregivers, Clinicians, Researchers, Industry Partners & Patient Organizations: Share Your Voice in UMDF’s Annual Strategic Plan Survey
Earlier this year, more than 200 members of our community helped build UMDF’s FY2027–29 Strategic Plan – a roadmap for faster diagnosis, better access to care, deeper collaboration, stronger awareness, and more investment in transformational research.
Now we need your voice again. Your experience shows us where diagnosis and care break down, helps us measure progress from where we stand today, and shapes the resources and community we’re building together.
Strategic Plan-Focused Surveys are now open for Patients & Families, Clinicians, and Collaborators (Researchers, Industry & Fellow Patient Advocacy Groups) at www.umdf.org/surveys.
Happy National Author’s Day!
On November 1, we celebrated National Author’s Day with a special shoutout to UMDF Founder and Chairman Emeritus Charles Mohan and his book, The Donkey and The Cart.
Sharing Chuck’s story and his daughter Gina’s mitochondrial disease diagnosis, the book offers an intimate look at how a father’s grief helped spark a medical movement, ultimately leading to the founding of UMDF and continued advances in mitochondrial disease research.
When you pre-order your copy of The Donkey and The Cart, 50% of all book proceeds will be donated to UMDF in support of Gina Mohan’s Legacy Fund.
Click here to pre-order your copy today.
Be sure to check out our running list of books about mito or from mito families, here.
UMDF’s Year-End Giving Campaign to Feature St. Louis Family
Watch your mailboxes for UMDF’s Annual Give Energy mailer, which this year focuses on the Meyer family of greater St. Louis. Paxton Meyer, age 7, lives with SDHA-related Complex II deficiency, a rare form of mitochondrial disease that causes developmental delays, muscle weakness, and respiratory issues with no available treatment or cure. You can get a jumpstart on supporting families like Paxton’s this upcoming holiday season by visiting our Give Energy donation page.
Walk with UMDF in Orlando, FL
The final Energy for Life Walk of 2026 is happening Saturday, November 7, at 9 AM ET at Bill Frederick Park (3401 S. Hiawassee Rd., Orlando, FL 32835).
Ready to get moving while raising awareness and funds for the mitochondrial disease community? Join fellow mito families and advocates in Florida for a morning of community, connection, and support. There’s still time to register and make a donation to the Energy for Life Walk – Orlando.
Stay tuned! The 2027 Energy for Life Walk lineup will be announced soon, and we just might be coming to a city near you!
UMDF’s Team Activate Takes on the 2026 Bank of America Chicago Marathon
Last month, UMDF’s Team Activate hit the streets for the 2026 Bank of America Chicago Marathon, raising awareness and funds for mitochondrial disease research. UMDF staff members were also there to cheer on the runners and show their support!
Thanks to the dedication of this year’s participants, Team Activate raised more than $100,000 in support of UMDF’s mission. We’re incredibly grateful to everyone who ran, donated, and cheered the team on!
Interested in joining Team Activate in 2027? Email Kelsi Martinez at kelsi.martinez@umdf.org to learn more.
If you would like to support Team Activate and our 2026 runners, click here.
Register for This Month’s Ask the Mito Doc and Bench-to-Bedside Webinars
There are two opportunities this month to learn from leading experts and get answers to important questions about mitochondrial disease.
For the scientific and medical community join us for November’s Bench-to-Bedside webinar, LHON: Gene Therapy, Visual Recovery, and Clinical Outcomes, on Monday, November 9, at 12 PM ET. The webinar will be moderated by Zuela Zolkipli Cunningham, MD, of Children’s Hospital of Philadelphia, PA, and Fernando Scaglia, MD, Baylor College of Medicine, Houston, TX alongside speakers:
- Patrick Yu-Wai-Man, BMedSci, MBBS, PhD, FRCPath, FRCOphth, University of Cambridge, Cambridge, and Moorfields Eye Hospital, London, UK
- José-Alain Sahel, MD, University of Pittsburgh School of Medicine, Pittsburgh, and Sorbonne Université, Paris
Click here to register.
Later in the month, the full community is invited to the Ask the Mito Doc webinar on Wednesday, November 18, at 7 PM ET. This month’s webinar will explore the important role nutrition plays in mitochondrial disease alongside Mark Tarnopolsky, MD, PhD, FRCP(C), McMaster Children’s Hospital / Hamilton Health Sciences Foundation Chair in Neuromuscular Disorders, Toronto, Canada. Bring your questions for a discussion with UMDF and clinicians on Nutrition, Supplements & New Mitochondrial Disease Therapies: What Patients and Families Need to Know.
Click here to register and click here to submit your questions.
Missed last month’s webinars? Catch up on the latest Ask the Mito Doc here and Bench-to-Bedside webinar here.
Celebrating Leaders and Innovators in the Mitochondrial Disease Community
Congratulations to Mighty Therapeutics for FORZINITY and UCB Biopharma for KYGEVVI on being named Industry Innovator Honorees at the National Organization for Rare Disorders, Inc. (NORD) Rare Impact Awards! We also congratulate Dr. Bruce Cohen of Akron Children’s on receiving the Hower Award from the Child Neurology Society.
These recognitions celebrate the important contributions being made across the mitochondrial disease community, from advancing treatment options to improving care and support for individuals and families affected by mitochondrial disease. We’re grateful for their continued dedication and impact!
Last Stop on UMDF’s Biorepository Roadshow
Have you been hoping to participate in UMDF’s Biorepository Roadshow with COMBINEDBrain? There’s one final opportunity before we wrap up 2026!
Patients with a confirmed mitochondrial disease can participate December 3–4 in Denver, CO, by enrolling in UMDF’s patient registry, mitoSHARE, and donating a sample (blood, urine, or nasal swab).
Email registry@umdf.org to check availability and secure your spot. Keep an eye out for 2027 Biorepository Roadshow dates and locations, coming soon!
Register for the POLG Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting
UMDF, MitoAction, The POLG Foundation, and International Mito Patients are coming together for the POLG Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting on Tuesday, November 17, at 10 AM ET.
PFDD meetings help bring patients lived experiences, perspectives, needs, and priorities into conversations about the development and evaluation of medical treatments.
This meeting is open to the entire mitochondrial disease community, including patients, caregivers, clinicians, researchers, and industry partners. Join the conversation and help ensure the experiences and perspectives of those affected by POLG-related disease are heard.
Click here to register.
Update Your Information in mitoSHARE
Are you enrolled in UMDF’s mitoSHARE patient registry? As we approach the end of the year, take a moment to make sure your information is up to date. Keeping your profile current helps ensure you continue receiving information about clinical trials and research studies that may be relevant to you.
Not enrolled yet? Click here to learn more and join mitoSHARE.
POLG Natural History Study Now Enrolling at Two Sites
We are excited to announce that the POLG Natural History Study now has two active sites enrolling participants: Akron Children’s Hospital and UTHealth Houston. This study looks at how POLG-related mitochondrial disease affects people over time. What we learn will help researchers and clinicians better understand the condition and plan for future research.
If you or a family member is living with a POLG-related condition and would like to learn more about taking part, please contact UMDF at registry@umdf.org.
Mito Study Now Enrolling
If you’re an adult living with mitochondrial disease, you may be eligible for the FALCON study, which is exploring an investigational treatment option for adults with mito who are experiencing symptoms like fatigue and muscle weakness. Visit falconmitostudy.com to learn more – including connecting with a nurse to explore eligibility, what to expect, the study handbook, and more.
A Special Mindfulness with Mary Webinar
Bring your art supplies and creativity for a special Mindfulness with Mary webinar on Tuesday, November 24, at 12 PM EST!
This interactive session is open to the entire mitochondrial disease community and will explore art, gratitude, and connection as we look ahead to the holiday season.
Click here to register.
MitoWorld’s #BeyondTheDisease
Each month, UMDF partners with MitoWorld for #BeyondTheDisease, a feature highlighting advances in mitochondrial disease and the people responsible for them. This month, read about recent research that’s continuing to uncover the many ways mitochondria influence human health and disease. New studies are exploring how mitochondria are exchanged between brain tumor cells and surrounding healthy cells, potentially revealing new therapeutic targets for glioblastoma, while other research has identified a direct interaction between tau protein and mitochondrial complex I that may offer new insight into neurodegenerative diseases such as Alzheimer’s. Additional research is examining how mitochondrial DNA mutations influence cancer growth and treatment responses, as well as how mitochondria help regulate heat production in fat cells. Read more here.