UMDF Connect
Advocacy Update – December 2023
UMDF Advocacy Update – Dec. 2023 The House is scheduled to be out of session until January, while the Senate is scheduled to remain in session this week to continue to work toward an agreement on funding for Ukraine, Israel, and US border reform, as well as...
A message from UMDF President & CEO Brian Harman regarding STRIDE Study Results from Reneo Pharmaceuticals
To the mitochondrial disease community, We are saddened by the findings recently released by Reneo Pharmaceuticals regarding the STRIDE study for primary mitochondrial myopathy. We know such news weighs heavily on the entire mitochondrial disease community and we...
PDCD FDA Listening Session Report Now Available
On September 8, 2023, the United Mitochondrial Disease Foundation co-hosted a Patient-led Listening Session with the U.S. Food & Drug Administration for Pyruvate Dehydrogenase Complex Deficiency (PDCD) with fellow patient advocacy groups MitoAction, Hope for PDCD,...
Mitochondrial Medicine Society Issues Health Guidance for this Winter
Published 12/5/23, 5:31pm The Mitochondrial Medicine Society (MMS) issued the following statement regarding vaccinations this winter: The changing seasons bring the risk of respiratory seasonal illnesses in our mitochondrial disease patients. Some patients are at...
Ask the Mito Doc – November 2023; Q&A
Ask the Mito Doc November 2023 Coffee and Conversations - Four Breakout Room Sessions DOWNLOAD the Coffee and Conversations Resources (pdf) >> Adult Patients Breakout #1: Mito 101 - Things I Wish I Knew Years AgoFernando Scaglia, MDParents/Caregivers...
Research Update from 2019 accelerators winner Arwen Gao, PhD
In 2019, accelerators project donors helped the mito community make history at the first ever Big Pitch event at the UMDF Symposium on Mitochondrial Medicine 2019. For the prize, three pre-selected post-doctoral finalists each gave a 5-minute pitch of their research...
Mito Study Roundup: Studies Available for Patients, Caregivers
Mito Study Roundup: Studies Available for Patients, Caregivers Updated 2/8/24, 11:57 ET am We all want more and better therapies for mitochondrial disease, and to achieve this goal we need patients who are willing to help by participating in clinical research even...
Advocacy Update – November 2023: CMS Changes Definition of Medicare Caregiver in New Rule
Published 11/29/23 President Biden Signs Funding Bill, Averting a Government Shutdown On November 16, President Biden signed the stopgap funding bill passed by the House and Senate. The short-term two-tiered spending bill includes temporary extensions of expiring...
Language Encouraging NIH to “Expand, Accelerate, and Collaborate” on Mito Research Makes it in HHS Appropriations Report
Published 10/24/23; Updated 10/25/23, 4:30 pm ET The wait for a new House of Representatives speaker has ended with Rep. Mike Johnson of Louisiana. With that business handled, looming large is the emergency supplemental spending package for Israel and Ukraine, which...
Ask the Mito Doc – October 2023; Q&A
Ask the Mito Doc October 2023 Diet, Nutrition and Nutraceuticals for the Mitochondrial Disease Patient Clinician: Dr. Mark Tarnopolsky, MD, PhD, FRCP(C), McMaster University Medical Center, Ontario, Canada Q: Are there different types of Creatine? Does one type...