Opportunity Details
State Advocacy Leader – PRMRP campaign
Volunteer Role Title:
State Advocacy Leader – PRMRP campaign
FSHD Society Staff Contact:
Anna Gilmore, Chief Program Officer
Position Description:
The Peer Reviewed Medical Program (PRMRP) is a government fund that offers grants for research on a list of eligible conditions. In order for FSHD to remain on that list, the US Senate must include it in their annual Appropriations bill. Each year, we must remind our representatives how important FSHD research is to get us closer to a cure. Every voice matters!
A State Advocacy Leader is a key partner in this effort. They will reach out to their Senators as the primary point of contact representing the FSHD Society in their state. They will schedule and facilitate a Zoom meeting with Senate staff to share their story and make our request. They may also coordinate a small group of other Advocates who will all attend the meeting together. If desired, an FSHD Society staff member can also attend your meeting(s) to support the conversation.
Requirements:
-
All activity for this opportunity can be done from home via Zoom.
-
Training, supporting materials, letter templates, and talking points will be provided.
-
Total time commitment for this role will be up to 5 hours, including:
-
Initial training call February 25th, 2026 (1 hour)
-
Initial outreach & meeting scheduling (0.5 hours)
-
Meeting preparation (1 hour)
-
Senate meeting (0.5 hours)
-
Optional meeting debrief (0.5 hours)
-
Follow up training call, mid-April (1 hour)
-
Communication follow-up (0.5 hours)
Advocacy
Age Minimum (with Adult): 14+, Minimum Age:18+
Sign up with a team
This link allows you to participate in this opportunity with a team. A team can be a family team, corporate team, or any kind of organized group. When you click on the link you will have the option to:
- Choose an existing team you're already a member or captain of, or
- Create a new team to sign up.
Signup Questions
Please respond to the following questions in order to signup for this opportunity: