UMDF Connect
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...
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...
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 ...
Research Update from 2023 accelerators Runner-Up Jonathan Dietz, PhD
Research Update from 2023 accelerators Runner-Up Jonathan Dietz, PhD In June 2023, Jonathan Dietz, PhD presented his research project “The Role of Metaxins in Mitochondrial Health and Homeostasis” during the Big Pitch event at UMDF’s annual conference on...
Meet Gavin
“I can’t even tell you how often we were in the hospital in those early years,” said Nikki about her son Gavin, who was diagnosed with mitochondrial disease as a toddler. The disease rapidly progressed, causing chaos in Gavin’s small body. At age five, he received a...
Meet Jeremiah
Like many parents, Aneesa’s introduction to mitochondrial disease was jarring. After months of jumping from specialist to specialist who ran test after test searching for answers around the weakness in her then seven-month-old son, Jeremiah, she got a dreaded answer....
Mitochondrial Medicine 2023: Rethink Medicaid: Government Programs & Medicaid Waivers
DOWNLOAD Stacy and Jenny's Slides (pdf) >> DOWNLOAD the Medicaid Glossary of Terms (pdf) >> Due to technical issues with the live recording in Charlotte, this presentation has been RE-RECORDED for our community.