The Myotonic Dystrophy Foundation (MDF) is launching our first ever virtual Advocacy Week on May 2-6th to urge Congress to increase federal funding for myotonic dystrophy (DM) research to help us discover treatments and a cure. Advocates from across the country will be meeting virtually with their members of Congress and staff urging them to continue DM federal research funding through the Department of Defense Peer Reviewed Medical Research Program (PRMRP), secure new DM research funding as part of the Congressionally Directed Medical Research Program (CDMRP) and initiate a new NIH research effort focused on DM and related repeat expansion diseases.
To date through our advocacy efforts, we have secured an additional $7.7 in new DM research projects through the PRMRP program with more grants expected in the coming year.
Over the past several years, MDF and our community have made major progress in our work to improve health care, advance research, and accelerate the drug development pipeline. We have won major victories when the Social Security Administration designated congenital DM as eligible for their compassionate allowance program to more quickly enable individuals to obtain disability benefits including health care coverage and hosted the first ever Patient Focused Drug Development meeting with senior FDA officials to advance drug discovery.
Under the new strategic plan, MDF has launched a new National Advocacy Committee (NAC) which is leading this effort. To prepare for Advocacy Week, we are hosting a webinar on Thursday, April 21st from 12-1 PM PDT/3-4 PM EDT to teach advocates about how to educate your Senators and Representatives about DM and successfully build relationships with them and their staff to win their support for our agenda. Advocates will learn how to schedule a meeting with your member of Congress and their staff either back home or in D.C., the dos and don’ts of a congressional meeting, and how to effectively follow-up after your meeting.
We hope you can join us for the upcoming webinar and plan to participate in Advocacy Week to make our voices heard loud and clear in Washington. We welcome first time advocates who might be a little nervous about talking with your elected representatives in Washington and veteran advocates who helped build awareness and support for the MDF research, treatment, and cure agenda. Together, we can change the world and improve the lives of everyone living with DM.