UMDF Connect
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 – 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...
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...
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...
Advocacy Update – February 2023: Could ARPA-H Change the Research Landscape for Rare Diseases?
For many years, UMDF has worked to encourage greater mitochondrial disease research funding through the National Institutes of Health (NIH). And we have also worked to direct mitochondrial disease research funding through the Peer Reviewed Medical Research Program of...
Symposium 2023 – Keeping You Safe
Symposium 2023: Patients and Families - Keeping You SafeUMDF Mitochondrial Medicine 2023 COVID-19 Protocols as of February 13, will include: At this time, we are not requiring attendees to attest to being vaccinated. Although COVID cases are lower than 2022, most...
Advocacy Update – January 2023: What Does 2023 Hold for Mito Advocacy?
Year-End Advocacy Success Recap 2022 ended well for UMDF, thanks to the activism of UMDF members, with the final federal funding bill passed and signed by President Biden on December 29th. As mentioned last month, the bill included Department of Defense (DoD) funding...
Ask the Mito Doc – January 2023; Q&A: Conserving Your Energy in the New Year
Ask the Mito Doc - January 2023 Q&A: Conserving Your Energy in the New Year Presenter: Bettemarie Bond, Patient Advocate and Ambassador for Oley, MDA and UMDF Clinicians: Dr. Zarazuela Zolkipli-Cunningham, MD and Dr. Amy Goldstein, MD from the Children’s...