UMDF Connect
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....
Updated COVID-19 Recommendations from UMDF’s Science & Medical Advisory Board – May 2023
COVID-19 Update - Posted May 23, 2023 Although the COVID-19 pandemic is declared over, the COVID-19 virus is still causing illness and death in the United States and around the world. We now enter the endemic phase, which means that it will be present in the...
Research Update from 2013 UMDF Grant Recipient James Stewart, PhD
Funding nearly $15 million in research – research that is often underfunded but critical to the diagnosis and treatment of patients with mitochondrial disease – that’s the legacy of the UMDF research grant program. James Stewart, PhD received a UMDF research grant in...
Ask the Mito Doc – April 2023; Q&A: Endocrine Complications of Mitochondrial Disease
Ask the Mito Doc April 2023 Endocrine Complications of Mitochondrial Disease Clinician: Shana McCormack, MD, MTR, Children’s Hospital of Philadelphia Watch the video: https://youtu.be/L-ck5ddfky4 Q: Do any of the following supplements help to regulate violent swings...
Advocacy Update – April 2023: Spring on Capitol Hill
Congress recently returned from its two-week spring recess, kicking off a busy work period leading to the Memorial Day recess. This week, four House committees held health-related hearings, and the Senate HELP Committee is expected soon to take up Pharmacy Benefit...
Ask the Mito Doc – March 2023; Q&A: Clinical Trial Readiness and Emerging Therapies for Primary Mitochondrial Disease
Ask the Mito Doc March 2023 Clinical Trial Readiness and Emerging Therapies for Primary Mitochondrial Disease Clinician: Dr. Mary Kay Koenig MD, University of Texas McGovern Medical School, Houston, TX Watch the video: https://youtu.be/QLQuNM53xPk Q: Would you...
Advocacy Update – March 2023: Federal Appropriations 101 and Why Advocacy Matters for Mito
Every year, UMDF, with help from the Congressional Mitochondrial Disease Caucus (co-chaired by Reps. Fitzpatrick (R-PA) and McGovern (D-MA) work to educate Congress on federal funding priorities for mitochondrial disease. Specifically, we advocate...
Ask the Mito Doc – February 2023: Cardiac Disease and the Mitochondrial Patient
Ask the Mito Doc February 2023 Cardiac Disease and the Mitochondrial Patient Clinicians: Hilary Vernon, MD, PhD, Reid Thompson MD, Rebecca McClellan, MGC, CGC. From Johns Hopkins School of Medicine Watch the video: https://youtu.be/lTKIasetPJM Q: How does...
Reata Pharmaceuticals Announces FDA Approval of SKYCLARYS™ (Omaveloxolone) for Friedreich’s Ataxia. Learn What this Means for the Mito Community.
March 1, 2023 -- The United Mitochondrial Disease Foundation (UMDF) applauds the decision by the U.S. Food and Drug Administration (FDA) to approve a medication to treat Friedreich’s Ataxia (FA), making it the first disease associated with mitochondrial dysfunction to...
Research Update from 2015 UMDF Grant Recipient Sara Nowinski, PhD
In 2015, Sara Nowinski, PhD received a $70,000 grant award for her work “Characterizing the Function of the Atypical Mitochondrial Kinase ADCK3.” Dr. Nowinski’s work endeavored to improve the understanding of ADCK3 function in the synthesis of coenzyme Q and...