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A Recap of Mito Med 2026
Mito Med 2026 brought together more than 600 patients, families, caregivers, clinicians, researchers, and industry partners from around the world in Orlando, Florida, for a week of connection, education, and collaboration. Attendees explored the latest advancements in mitochondrial disease research while gaining valuable insights from the lived experiences of patients and families navigating mito every day. The week concluded with UMDF’s signature Evening of Energy banquet, where we celebrated the remarkable individuals who make a difference in the mitochondrial disease community. Congratulations to our 2026 winners:
UMDF was also honored to recognize Dr. Peter Stacpoole of the University of Florida with the Vanguard Award, in recognition of his decades of dedication and service to the mitochondrial disease community. The award was presented by Dr. Bruce Cohen and Dr. Richard Haas. A special thank you to our 2026 sponsors, Edith L. Trees Charitable Trust, UCB, Mighty Therapeutics, Chemistry RX, Pharming, Children’s Hospital of Philadelphia, Tisento Therapeutics, Leigh Syndrome International Consortium, BPGbio, Saol Therapeutics, Akron Children’s Hospital, Baylor Genetics, Chewy, Lucid Scientific, Pretzel Therapeutics, Variantyx and Chiesi Global Rare Diseases. And a special thank you to The Logan Sloane Aronson Research Fund for Mitochondrial Disease in Honor of Sydney Breslow and The Brian Fleming family for underwriting scientific and medical scholarships. Save the week of June 14, 2027 for Mito Med 2027! We look forward to welcoming the mito community to Philadelphia for another inspiring week of education, connection, and hope. Stay tuned for an exciting partnership announcement!
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Mito Med Replays With three full days of educational sessions, Mito Med 2026 offered valuable insights for patients, families, caregivers, clinicians, and researchers alike. If you missed a session — or would like to revisit your favorites — recordings will be available this fall. Family-focused sessions will be posted to YouTube in September, while scientific sessions offering Continuing Medical Education (CME) credit will be available on Mito U in October. Stay tuned for more information and access details in the coming months.
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Tell Us How We Did at Mito Med 2026 What did you think of Mito Med this year? We want to hear from you about how we did. Visit the Evaluations tab in the Mito Med app and let us know. All conference attendees who submit a completed evaluation form online by July 31, 2026, will be entered in a drawing to potentially win one free conference registration for the 2027 conference in Philadelphia.
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Meet the 2026 Research Grant Award Winners UMDF in collaboration with the Mito Foundation, recently announced the 2026 Research Grant Award Winners. This year, the two organizations awarded eight research grants totaling $500,000 USD to ensure that the next generation of mito researchers is supported alongside established leaders in the field, including: 2026 Principal Investigator Grants ($100k Awards) Mary Herbert, PhD, Monash University – Development of regulatable mitoTALENs to increase the efficacy of mitochondrial replacement therapy Javier Triñanes-Ramos, PhD, Amsterdam Leukodystrophy Center – Gene therapy in humanized Dars2 mouse model that recapitulates LBSL neuropathology 2026 Postdoctoral Fellow Grants ($50k USD Awards) Alvaro J. Narbona-Perez, PhD, University of Utah – Function and regulation of the mitochondrial disease-causing metabolite transporter SLC25A19 Melis Kose, MD, PhD, Children’s Hospital of Philadelphia – OPERA (OPA1-Related Energetics Rescue): Translational Validation of 20 Therapeutic Candidates in OPA1 Patient-Derived Retinal Ganglion Cells 2026 Graduate Student Grants ($25k USD Awards) Lily Farmerie, BS, University of Pittsburgh – A precision medicine approach targeting cardiovascular manifestations of m.3243A>G borne primary mitochondrial disease
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Order Your Copy of The Donkey and The Cart by Charles A. Mohan Looking for your next read? Preorder UMDF Founder & Chair Emeritus, Charles A. Mohan Jr’s new memoir, The Donkey and The Cart. In this powerful memoir, Chuck tells the story of how a mysterious disease 30 years ago kickstarted UMDF and a global grassroots movement. Half of the proceeds of every book sold benefit UMDF. Click here to order your copy.
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Welcome to UMDF’s New Scientific & Medical Advisory Board Members UMDF is pleased to welcome three new members to our Scientific & Medical Advisory Board (SMAB), Dan E. Arking, Ph.D., Johns Hopkins University, Jennifer Yang, MD, UC San Diego and Rady Children’s Hospital San Diego, and Fernando Scaglia, MD, FACMG, Baylor College of Medicine. Along with other members of the SMAB, they represent a group of leading mitochondrial researchers and clinicians, guiding the foundation in funding global research, ensuring scientific accuracy in medical literature, and providing vital clinical guidance to patients and medical professionals. Read more about their professional backgrounds here.
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Walk With UMDF This Summer
Lace up your sneakers and join us for the next UMDF 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. Whether you participate as an individual, join a team, fundraise in support of mitochondrial disease research, sponsor and/or volunteer, every step helps advance UMDF’s mission and brings hope to patients and families affected by mito. Together, we can raise critical funds, increase awareness, and strengthen the mito community. Ready to get involved? Click here to register for the Minnesota Energy for Life Walk, and click here to explore all upcoming Energy for Life Walk events happening across the country.
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UMDF’s Biorepository Could Be Coming to a City Near You This Summer
Patients with any form of genetically confirmed mitochondrial disease can participate by joining UMDF’s patient registry, mitoSHARE, and donating a sample at any of the COMBINEDbrain roadshows happening across the US. Biorepositories, like those hosted by UMDF and COMBINEDbrain, are a crucial tool to better understand a disease, develop new treatments, and work toward potential cures. Upcoming locations & dates:
Act now if you would like to register for a specific roadshow location, as limited spots are available. Email registry@umdf.org at least two weeks prior to the date listed to confirm availability.
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Check Out Available Research Opportunities Interested in participating in studies to help researchers better understand mitochondrial disease? UMDF maintains an ongoing list of studies that you might be eligible to participate in as a patient or caregiver. Currently, open studies include:
Click here to learn more about available research opportunities.
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UMDF Hosts PCQD Listening Session with the FDA On July 23, UMDF will host a Primary Co-Enzyme Q10 Deficiency (PCQD) Listening Session with the U.S. Food and Drug Administration (FDA). 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. During this session, seven families will give testimony based on their lived experience. While the session is not open to the public, the meeting will focus on elevating the voices of PCQD patients to regulators, and a full report will be issued within a few months of the meeting. You can learn more about UMDF’s regulatory work at umdf.org/advocacy. Thank you to our listening session partner, MitoAction.
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