MDF Announces House Appropriations Committee Support For New NIH Repeat Expansion Disease Initiative (REDI)

U.S. House Appropriations Committee included a MDF led provision in the fiscal year 2023 Labor, Health and Human Services funding legislation that will help establish a new Repeat Expansion Disease Initiative (REDI) at the National Institutes of Health (NIH) to increase federal funding for research on repeat expansions like myotonic dystrophy.

MDF Advocates Unite to Increase DM Research Funding

Advocates from across America took part in our first Advocacy Week at the beginning of May. Led by MDF's National Advocacy Committee, advocates took action each day to urge our Representatives and Senators in Congress to increase federal funding for myotonic dystrophy (DM) research to help us find a cure.

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 MDF 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 MDF is presenting an outstanding community advocate award at the MDF Annual Conference this Fall.

MDF Advocacy Update - Spring 2019

MDF 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.

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