Our Mission

With the recent advances in FSHD research, we need to plan for a new era of drug development and clinical trials, while ensuring that fundamental research continues to receive vital support. Between 2013-2014, the Board of Directors and leadership team reviewed the FSH Society’s performance and charted directions for the new era.

To deliver treatments and a cure for FSH muscular dystrophy.

Be the premier catalyst for connecting all the stakeholders. Promote research focused on FSHD through thought leadership, networking, and funding.

Our review reaffirmed the singular importance of the FSH Society’s role in funding fundamental research and advocating for patients and families, and called on the Society to increase its impact scientifically and to broaden its ability to serve patients, families and clinicians. We have identified the following four strategic imperatives:

  1. Knowledge: Act as a driving force in the development of research directed toward treatment and a cure of FSHD.
  2. Empower: Mobilize patients and communities to take action.
  3. Connect and Communicate: Serve as the leading source of information and support for all patients and families with FSHD.
  4. Finance: Grow and diversify revenues to invest in research, education, patient support, and operational capacity.