It is crucial that FSHD voices are heard.
By engaging with elected officials, regulatory agencies, and government offices, we can make a big difference in getting treatments to families faster. Leveraging these networks to expand the awareness and understanding of FSHD, we can help source funding, build collaborations, and expedite review processes to break down barriers in drug development.
Upcoming Initiatives
Day on Capitol Hill: May 8th, 2024
One of the ways we are launching our advocacy initiatives is our inaugural Day on Capitol Hill! A dozen FSH’ers and their families will attend meetings with a targeted list of Senators and Congressmen in a day-long awareness push. We are asking for the recognition and support of these lawmakers, but more importantly, we are building relationships that will guide our future efforts as well.
FDA Listening Session on Upper Body Moility
Many of you will remember our pivotal Voice of the Patient Forum with the FDA in 2020. In a follow-up to that conversation, we are asking the FDA to hear our families’ stories on the challenges of living with upper-body weakness. A strong understanding of this aspect of FSHD will help the FDA review future potential treatments.
Tell Us How Upper-Body weakness Has Impacted You
- Do you have trouble washing your hair, or dressing?
- Have you suffered a bad fall because you couldn’t raise your arms to catch yourself?
- Was your career path been altered when you could no longer lift or carry heavy weight?
We want to hear your thoughts & perspectives! Make your voice heard by contributing your story. Click the button to fill out a short form.
Past Efforts
Our efforts have been met with success as the FSHD Society has achieved unprecedented visibility and attention for FSHD. Here are some examples of our advocacy milestones over the past decade:
Future Plans
Stay tuned for upcoming projects & campaigns! We have big plans, and we want your voice to be heard loud and clear.