UMDF Connect
Bench to Bedside – Clinical Trial Updates
Bench to Bedside - Special Edition: Clinical Trial Updates All answers today are based on personal experience of the participants. As always, please consult your personal physician prior to taking any action.Bnech to Bedside - Special Edition: Clinical Trial...
December 2025 Newsletter: NY Jets Bring Mito Awareness, New Research Grants, Clinical Trials Updates, and more
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UMDF Partners with MDA to Co-Fund Two New Mito Research Grants
UMDF has teamed up with the Muscular Dystrophy Association (MDA) to co-fund two new research projects to accelerate the development of promising therapies. Amongst the projects co-funded: Mariena D’Aurelio, PhD, Weill Medical College of Cornell University, will...
Ask the Mito Doc – Kygevvi
Ask the Mito Doc - Special Edition: FDA Approval of Kygevvi for TK2d All answers today are based on personal experience of the participants. As always, please consult your personal physician prior to taking any action.Ask the Mito Doc - Special Edition: FDA...
UMDF Cosigns Letter to Congressional Leaders Urging Passage of Give Kids a Chance Act and Accelerating Kids’ Access to Care Act
UMDF Joins Fellow Mito PAGs on Letter to Senate Special Committee Regarding FDA Flexibility for DCA
Ask the Mito Doc – November 2025; Q&A
Ask the Mito Doc - November 2025 Q&A All answers today are based on personal experience of the participants. As always, please consult your personal physician prior to taking any action.Topic: Genetic Testing in Mitochondrial Disease - What Patients and...
Your November UMDF Newsletter: Celebrating a TK2d Therapy Approval, MELAS Survey, Mito Books, and More
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FDA Approves First-Ever TK2d Therapy
11/3/25, 5pm EST -- Earlier today, the U.S. Food and Drug Administration (FDA) approved UCB’s Kygevvi (doxecitine and doxribtimine) to treat the mitochondrial disease thymidine kinase 2 deficiency (TK2d). “It’s hard to put into words what today’s decision means for...
SPECIAL NATIONAL AUTHOR’S DAY FEATURE: Mito Patient and His Mom Talk About Self-Publishing “Children’s Chapter Adventure” Book
KSS Patient and Mom Talk About Self-Publishing Their "Children's Chapter Adventure" Book Thomas Gordon is not your typical author. Diagnosed with the mitochondrial disease Kearns-Sayre syndrome in 2014, he lives life totally blind, relies on hearing aids, and cannot...