UMDF Connect
An Update from UMDF Board Chair Dr. Alicia Palladino
Dear UMDF Community, For those of you who had the opportunity to join more than 700 patients, family members, clinicians, and researchers at the Mitochondrial Medicine Conference in Cleveland a few weeks ago, I am sure you will agree that it was a powerful experience....
Advocacy Update – July 2024: Watch Mito Caucus Briefing, A Win with NIH Language, and more
Last week, UMDF hosted a congressional briefing with the U.S. House of Representatives’ Mitochondrial Disease Caucus, which featured speakers from across the mito community, including Caucus Co-chairs Rep. Brian Fitzpatrick & Rep. Jim McGovern; Andy Dearth,...
UMDF Names Award Winners for 2024
From Left to right: Fatema Shikora with Jennifer Chickering of Tisento Therapeutics, Jared Goettemoeller with Dr. Tyler Story of UCB, Linda Ramsey with Gene Kelly of Stealth BioTherapeutics. At Mito Med’s Evening of Energy event, UMDF announced...
An Announcement from UMDF Board Chair Dr. Alicia Palladino
Dear UMDF Community: As you know, Brian Harman has been the UMDF President and CEO for the past six years, driving numerous critical initiatives on behalf of the mitochondrial disease community. Brian has been a dynamic and innovative leader, greatly expanding UMDF’s...
Ask the Mito Doc – May 2024; Q&A
Ask the Mito Doc - May 2024 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.Mitochondrial Disease PrimerClinicians: Melissa Walker, MD, PhD, Massachusetts...
Advocacy Update – May 2024: FAA Reauthorization, Telehealth, Accelerating Kids’ Access to Care Act, and more
Nearly a decade ago, thanks to UMDF advocates, mitochondrial disease became an eligible topic in the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). The program has since provided more than $70 million in federal funds for mitochondrial disease...
Ask the Mito Doc – April 2024; Q&A
Ask the Mito Doc - April 2024 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: Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke-like...
Meet Vera Johnson
By all appearances, 10-year-old Vera Johnson of Minnesota seems very much like her peers. She lives life largely outdoors and especially loves winter, when she can ice skate, sled, and even occasionally cross-country ski. In the summer, she spends days swimming at a...
Ask the Mito Doc – March 2024; Q&A
Ask the Mito Doc - March 2024 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: Clinical Trial Readiness: Preparing for 2024 and Beyond ...
UMDF Announces Inaugural Venture Philanthropy Investment: The Mito Fund Invests $500k in Pierrepont Therapeutics, Inc. to Help Move a Mitochondrial Disease Therapy Forward
(APRIL 4, 2024) The United Mitochondrial Disease Foundation (UMDF) today announced the inaugural investment for its venture philanthropy initiative, The Mito Fund. The Mito Fund has invested $500,000 in Pierrepont Therapeutics, Inc., a company focusing on treatments...