Aiming to access fresh funding for FSHD research

We need YOU – to write to your senators

by Anna Gilmore, FSHD Society

Last year was an exciting one for our community as we launched our first FSHD Day on Capitol Hill! A small but mighty group of advocates succeeded in getting a House Resolution introduced with bipartisan sponsorship. They built valuable relationships with lawmakers who continue to support our community.

In partnership with the Muscular Dystrophy Association (MDA), this year we are building on our momentum to make a very specific request. The Peer Reviewed Medical Research Program (PRMRP) is a federal grant program that supports scientific research. There is a list of diseases and conditions that researchers must be working on to apply. Becoming one of the eligible diseases for this grant would open up a new source of much-needed funding for basic research.

We’ve come such a long way in recent years, but there is still so much we don’t know about FSHD. The only way to get onto the list of eligible diseases for the PRMRP is to have a United States senator advocate for it on our behalf.

We are launching a campaign this spring, and we will need everyone’s help! If you would like to write a letter or email to your senator, join a Zoom meeting with legislative staffers, or maybe get even more involved, please let us know right away! Visit our Advocacy webpage to learn more.