UMDF Connect
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...
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...
Advocacy Update – December 2022: Mito Research Funding Looks Headed for Renewal in Newly Unveiled Funding Bill
On Tuesday, December 20, 2022, lawmakers unveiled their long-awaited $1.7 trillion government funding package. The package includes 12 appropriations bills, including the Defense Appropriations bill. Thanks to our advocacy efforts, mitochondrial disease continues to...
accelerators Research Update from Rachel Guerra, PhD, UMDF Funded Runner-Up from Big Pitch 2019
Research Update At the very first The Big Pitch Event at the UMDF Symposium for Mitochondrial Medicine in 2019, three candidates had five minutes each to present their research projects over a live webcast. When the online voting concluded, Dr. Arwen Gao of Ecole...
Advocacy Update – September 2022: Three Things You Should Ask of Congress as We Wrap Up World Mitochondrial Disease Week
This week, as part of World Mitochondrial Disease Week, UMDF President & CEO Brian Harman caught up with the offices of several members of Congress to talk about mitochondrial disease and the support we need from the federal government. We wrapped up each call...
UMDF Marks World Mitochondrial Disease Week, September 18 – 24, 2022
This coming week, September 18 – 24, marks World Mitochondrial Disease Week. It provides a time for the entire mito community to share our joys, our sorrows, our hopes, and our fears. It’s a week when we can reflect on all we’ve collectively accomplished, while...
UMDF Brings Awareness, Support for Patients and Families on TK2d Tuesday — Sept. 13, 2022
This Tuesday, September 13 is TK2d Tuesday, a day to bring awareness to a rare genetic mitochondrial disease, Thymidine kinase 2 deficiency. It’s estimated up to 2,700 people in the United States are living with TK2d. We thank the many patients, families,...