UMDF Connect
Marking #WorldMitoWeek Through Advocacy
(Sept. 23, 2023) As we wind down the final days of World Mitochondrial Disease Week, we want to take a moment to thank the UMDF advocates who helped us have over 100 touchpoints with Congress this Wednesday on UMDF’s Virtual Capitol Hill Day. Thanks to your passionate...
UMDF Reacts to Today’s Historic FDA Listening for the Mitochondrial Disease PDCD
(Sept. 8, 2023) Earlier today, the United Mitochondrial Disease Foundation (UMDF) cohosted a listening session with the U.S. Food and Drug Administration (FDA) with fellow advocacy group MitoAction regarding the mitochondrial disease Pyruvate Dehydrogenase Complex...
Energize the Fight – World Mitochondrial Disease Week 2023
We’re excited to unite with other mitochondrial disease-focused patient advocacy groups across the globe to spread awareness on World Mitochondrial Disease Week, September 18-24, 2023! Together, we can promote understanding and recognition with the hope that increased...
Back to School Resources for Mito Families
With kids returning from summer break, it’s the perfect time to think about resources for your mito student. Education advocate and UMDF Ambassador Melissa Knox has prepared a number of resources to help parents of students with mitochondrial disease get the most from...
Video Assessment for Primary Mitochondrial Myopathy (PMM) and PolG patients, conducted by research firm Casimir/Emmes
Video Assessment for PMM and PolG patients This study, “Development of the Mitochondrial Video Assessment (MVA) as an Outcome Measure for the Evaluation of Patients with Mitochondrial Myopathies,” hopes to develop sensitive, reliable outcome measures that will provide...
UMDF Celebrates the 2023 Vanguard Award Winner Robert Naviaux, MD, PhD
Above: Richard Haas, MD, presents Robert Naviaux, MD, PhD, with the 2023 Vanguard Award. The UMDF Vanguard Award is presented to a scientist or physician in honor of his or her lifetime contributions to the field of mitochondrial medicine or research. The recipient is...
Preparing for Mitochondrial Medicine 2023: Schedules, App, Safety & More
Download the Mitochondrial Medicine App Now The official Mitochondrial Medicine Symposium app for 2023 is now available to all registrants via mobile devices and desktop. You’ll find the app has a lot of great features, including full programming schedules, a...
Ask the Mito Doc – July 2023; Q&A: Ask the Mito Doc Panel during UMDF Mitochondrial Medicine 2023
Ask the Mito Doc July 2023 Ask the Mito Doc Panel during UMDF Mitochondrial Medicine 2023 Clinicians: Eva Morava-Kozicz, MD, PhD, Mayo Clinic Austin Larson, MD, Childrens Hospital of Colorado Russell Saneto, DO, PhD, Seattle Children’s Hospital Jaya Ganesh, MD , Icahn...
Ask the Mito Doc – May 2023; Q&A: Special Session for the Newly Diagnosed
Ask the Mito Doc May 2023 Special Session for the Newly Diagnosed Clinicians: Rebecca Ganetsky, MD The Children’s Hospital of Philadelphia Colleen Clarke Muraresku, MS, LCGC The Children’s Hospital of Philadelphia Sumit Parikh, MD Cleveland Clinic Patricia...
Advocacy Update – May 2023: What Does the End of the Public Health Emergency Mean for Medicaid?
UMDF Washington Update – May 25, 2023 Debt Limit Negotiations Continue House Speaker Kevin McCarthy (R-Calif.) met with President Joe Biden on May 22, 2023, and had a "productive discussion," but they have not yet reached a deal on raising the U.S. debt ceiling....