Signup to receive the UMDF newsletter in your email monthly at umdf.org/newsletter-signup.
|
It’s Time for Mito Med in Orlando, FL Pack your bags and get ready to join us in Orlando for Mito Med 2026 June 17-20! We’re just weeks away from the UMDF Mitochondrial Medicine Conference, where the leading names in mitochondrial medicine and science come together with patients, families, caregivers, advocates, and industry partners for a one-of-a-kind experience focused on education and connection. As we celebrate 30 years of serving the mitochondrial disease community, this year’s conference features something for everyone, from expanded disease-specific family programming and engaging teen activities to the latest scientific and clinical updates shaping the future of mitochondrial medicine.
Highlights of Mito Med 2026 Expanded Disease-Specific Family Programming In addition to content for the broader mito community, this year’s Patient and Family Program will feature dedicated sessions for individuals and families impacted by Leigh syndrome, POLG, MELAS, MEPAN, and CPEO/KSS. These sessions are designed to provide peer support, meaningful connections, and opportunities to learn from others who share similar experiences. Click here to learn more about this year’s disease-specific programming. Scientific and Clinical Education Members of the scientific and medical community will have the opportunity to learn about emerging therapies, hear the latest research updates, participate in breakout discussions, and network with colleagues from around the world – including specialized tracks focused on Leigh Syndrome and MELAS. Click here to view the Scientific and Clinical Program. UMDF Updates and an Evening of Energy On Friday, June 19, join us for UMDF and the State of Mitochondrial Medicine, featuring the latest updates from UMDF leadership and a special fireside chat with UMDF Founder Chuck Mohan. Later that evening, celebrate with us at our magical Evening of Energy Banquet, beginning at 5:30 pm. The event will recognize our UMDF Volunteer Award recipients and feature special guest Sam Simon, whose captivating close-up magic will remind us all of the magic within our community. There’s Still Time to Register Registration is still open, and we would love to have you join us for this milestone year. Click here to register for Mito Med 2026.
|
||||||
|
Know Before You Go with the Mito Med App With UMDF’s Mito Med app, you’re one click away from everything you need to know about this year’s Mitochondrial Medicine Conference. Download the app for IOS and Android before arrival, so you can familiarize yourself with the hotel layout, find your way, view attendee and speaker information, see exhibitors, peruse sessions, check your schedule, and so much more. Enable notifications in the app, so you don’t miss out on a moment of Mito Med 2026. Click here to download the app.
|
||||||
|
Catch the Ask the Mito Doc and Bench-to-Bedside Replays Getting ready for Mito Med 2026? Last month, our Ask the Mito Doc and Bench-to-Bedside webinars gave attendees a preview of this year’s conference. Hear what participants can expect, new and exciting programming, important updates, and more. If you weren’t able to join us live, you can watch the Ask the Mito Doc replay here and the Bench-to-Bedside replay here.
|
||||||
|
Find a UMDF Biorepository Location Near You Help lend mito researchers a hand by participating in UMDF’s mitochondrial disease biorepository! In collaboration with COMBINEDBrain, the biorepository will once again be available at our Mito Med conference June 18-19 in Orlando, FL. If you can’t make it to this year’s conference, patients with any form of genetically confirmed mitochondrial disease can still participate by joining UMDF’s patient registry, mitoSHARE, and donating a sample at any of the COMBINEDbrain roadshows coming up across the US this summer. For more information, email registry@umdf.org. Upcoming Location & Dates:
|
||||||
|
Support Our Energy for Life Walk & Save the Date for the Next One Our first Energy for Life Walk of the season kicked off last month in St. Louis bringing together friends and families in support of the mito community. Together, we raised awareness and funding for mitochondrial disease, walked to bring hope to affected patients, and celebrated a wonderful event that brought the community together from near and far. Save the date for the next Energy for Life Walk — Minnesota taking place on Saturday, August 15, at 9 am CST at Wolfe Park in the Minneapolis suburb St. Louis Park. Click here to register, donate, or learn more about sponsorship opportunities. If you couldn’t make it to the St. Louis Walk, you can still support UMDF’s mission by donating or helping us plan next year’s event by emailing kelsi.martinez@umdf.org to join the committee.
|
||||||
|
UMDF Support Ambassadors and Staff Participate in Rare Access Curriculum Last month, more than a dozen UMDF Support Ambassadors and staff members participated in a two-part Rare Access Curriculum led by Amy Aikins of EveryLife Foundation. The training explored key topics such as health insurance coverage, Medicare and Medicaid, the insurance appeals process, and strategies for navigating the often-complex healthcare system. Participants also learned how patient advocates can help individuals and families better understand their coverage options and access the care and treatments they need. “With multiple therapies now approved in the mitochondrial disease space, we know helping with access is the next major step,” said UMDF President and CEO Kristen Clifford. “This training provides a really in-depth look at how we can assist mito patients with insurance coverage, especially when it comes to the appeals process.” You can learn more about UMDF’s new insurance assistance work here.
|
||||||
|
Meet the Sponsors Powering UMDF’s Team Activate’s Chicago Marathon Journey The momentum is building for the 2026 Bank of America Chicago Marathon! As UMDF’s Team Activate prepares to take on the miles ahead, we’re grateful for the sponsors who have joined us in supporting our mission and the mitochondrial disease community. Their partnership helps turn every step into progress toward a brighter future for those affected by mitochondrial disease. A heartfelt thank you to Team Recovery, Payscout, Stark, and the Tutu School for standing with us and helping Team Activate go the distance for mito families. Click here to learn how you can help support Team Active
|
||||||
|
Help Researchers By Participating in the MNGIE Survey Help researchers at the University of Cambridge and the University of Bologna learn more about the clinical progression of MNGIE (Mitochondrial Neuro-Gastro-Intestinal Encephalomyopathy) by participating in a natural history study. The study aims to collect existing patient data from clinicians worldwide to understand how MNGIE affects individuals, how the disease progresses over time, and how current treatments impact outcomes. Patients and families affected by MNGIE are encouraged to share study information with their treating clinician so that their data may be included. To participate, clinicians can contact the study team directly to receive a link to the secure REDCap survey. The survey takes approximately 30 minutes to 1 hour to complete. Click here to learn more about this and other available research opportunities.
|
||||||
|
Participate in Available Studies for Mitochondrial Disease Patients If you can’t make it to this year’s Mito Med Conference, you can still participate in mitochondrial disease related studies to help advance research. Currently, the following studies are enrolling patients:
Click here for more information about mitochondrial disease studies and survey opportunities. |
||||||
|
UMDF Talks PCQD with the FDA UMDF will host a Primary Co-Enzyme Q10 Deficiency (PCQD) Listening Session with the U.S. Food and Drug Administration (FDA) on July 23, focused on elevating the voices of PCQD patients to regulators. Seven PCQD families are expected to give testimony during the session. While the program is not public, a full report will be issued within a few months of the session. FDA listening sessions help the agency to gather direct input from patients, caregivers, clinicians, and advocacy organizations about the lived experience of a specific disease. The information collected is intended to inform regulatory decision-making – including how the FDA evaluates clinical benefit and meaningful endpoints when reviewing potential treatments. This is the fourth such event UMDF has led with the FDA, including a Patient-Focused Drug Development Meeting and listening sessions focused on PDCD and TK2d. A special thanks to fellow patient advocacy group MitoAction for co-hosting.
|
||||||
|