Advocacy Central
Advocacy News
Read up on the latest advocacy news affecting mitochondrial disease patients, research, clinical care and more.
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...
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...
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...
Advocacy Update – August 2022: The Inflation Reduction Act, Telehealth Extension, FY 2023 Appropriations and more.
Congress Passes the Inflation Reduction Act Congress ended a busy work period after passing the Inflation Reduction Act (IRA) over the weekend. Congress has now adjourned for August recess. The Senate returns on September 6, and the House returns on September...
Advocacy Update – May 2022: CDER Launches Program to Speed Development of Rare Disease Treatments
The Food and Drug Administration’s (FDA) Center for Drug Evaluation and Research (CDER) announced the launch of the Accelerating Rare disease Cures (ARC) Program. CDER’s Rare Diseases Team manages the ARC Program. The ARC program’s mission is to speed up the...
Advocacy Update – April 2022
White House Releases Fiscal Year (FY) 2023 Budget Request - Big Proposed Increases for Research On Monday, March 28, 2022, President Biden released his proposed fiscal year (FY) 2023 budget. The president’s budget request starts the Congressional budget process. The...
Advocacy Update – March 2022
Omnibus Bill Includes 151-Day Extension of Telehealth Waivers Earlier this week, President Biden signed a bill to fund the government through September (the fiscal year 2022) and send humanitarian aid to Ukraine. The bill also included several health priorities,...
UMDF’s 2022 Congressional Outlook
United Mitochondrial Disease Foundation 2022 Congressional Outlook As it reconvenes, Congress faces a packed agenda in a legislative year that will be shortened by the upcoming midterm elections and remains buffeted by the persistent coronavirus pandemic. The list of...
UMDF Updates Congress on Telehealth
Before the pandemic, telehealth coverage was limited in scope. However, the Centers for Medicare & Medicaid Services (CMS) and Congress expanded coverage to encourage broad adoption of telehealth for the duration of the public health emergency. Accordingly, we have seen an exponential increase in telehealth.
Powerhouse Podcast Episode #1 – A Conversation Adult Patient Brandon Leach
Powerhouse Podcast Episode #1 UMDF President and CEO Brian Harman and Science and Alliance Officer Dr. Phil Yeske debut the Powerhouse Podcast with a conversation with Brandon Leach. Brandon is a resilient young adult patient navigating mitochondrial disease, college...