Advocacy

MDF Advocates are the Key to A Cure

Since our founding in 2007, Myotonic Dystrophy Foundation advocates have been educating Congress on the need for increased myotonic dystrophy research funding, working with the Social Security Administration to eliminate red tape for individuals with congenital myotonic dystrophy, and leading initiatives with the U.S. Food and Drug Administration to accelerate drug development and better understand the desires of individuals living with myotonic dystrophy.

April Advocacy Update

This month’s advocacy update provides a brief report on our ongoing efforts to increase federal funding for myotonic dystrophy research and includes practical information for community members in need of health insurance coverage during the COVID-19 pandemic.

2020 Congressional Leadership Award & Advocacy Update

The 2020 Myotonic Congressional Leadership Award was presented to Rep. Adam Schiff, an early supporter of our efforts to add myotonic dystrophy to the DoD's Peer Reviewed Medical Research Program (PRMRP) who recently worked to secure a visa for a critical DM fellowship.

UC Irvine Medical School Roadshow

On March 3, 2020, Loraine Dressler presented to about 40 first and second year medical students at UC Irvine School of Medicine on behalf of the myotonic dystrophy (DM) community.

Rare Disease Month: Take Action to Increase DM Research Funding

Since 2017, PRMRP has awarded over $6 million for new myotonic dystrophy research projects. To continue this progress and increase myotonic dystrophy research funding, we need your help!

Report Out: Community Call January 2020

Over 70 community members attended a Community Call covering upcoming events like Rare Disease Day, tips for planning your own event and an advocacy update.

Fundraising Campaign and Advocacy Award Created to Celebrate the Life of Kayla Vittek

Kayla Vittek, with her mother, Lisa Harvey-Duren, was a leading advocate for the DM community, regularly appearing in news stories and on television, serving as a Youth Ambassador for Easterseals and participating in the MDA telethon. To remember Kayla, who passed away from heart-related complications in April 2019, Lisa created a fundraising campaign in her memory, and Myotonic is presenting an outstanding community advocate award at the Myotonic Annual Conference this Fall.

Myotonic Advocacy Update - Spring 2019

Myotonic has had a busy few months of activity in Washington, DC, continuing our efforts to secure research funds, engage lawmakers and make our presence known on Capitol Hill in 2019.

Myotonic Medical School Roadshow

Myotonic designed this volunteer initiative to educate the next generation of medical professionals about myotonic dystrophy in order to improve clinical care and shorten the diagnostic odyssey. We need you!

DM Advocate Glen Wiggans Participates in Federal Grant Review

Myotonic advocate Glen Wiggans, MD recently participated in the evaluation of research applications submitted to the Peer-reviewed Medical Research Program (PRMRP) sponsored by the Department of Defense. Glen was nominated for participation in the program by Myotonic. As a consumer reviewer, he was a full voting member of the review panel, along with prominent scientists, to help determine how the $330 million appropriated by Congress for Fiscal Year 2018 will be spent on PRMRP research.

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