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FSH Society News

Volunteers needed for Univ. of Minnesota studies

STUDY #1 Your participation is essential to advancing research on FSHD. Participants are sought for a University of Minnesota study on muscle stem cells in FSHD. The principal investigators are Michael Kyba, PhD, and Peter Karachunski, MD. What is involved? Study participants (FSHD and control individuals) will choose to provide any one or all of the following … Read more of “Volunteers needed for Univ. of Minnesota studies” »

Help Wanted: UC Irvine study seeks volunteers

“I just finished participating in this study as their very first volunteer patient, visiting on the 14th and 21st of August 2018. It was very easy and straightforward.” – Bryan K. First, a heartfelt thank you to all who responded to the initial notice calling for volunteers to participate in the UC Irvine study of … Read more of “Help Wanted: UC Irvine study seeks volunteers” »

For newly (and not so newly) diagnosed people

We have published a new e-brochure, “Not Alone,” by Kelly Mahon Hessler. Based on interviews with a wide range of FSH muscular dystrophy patients, parents, and partners, this e-brochure assures those who have received a diagnosis that whatever they are feeling, others have had the same experience. We also provide resources for people to get … Read more of “For newly (and not so newly) diagnosed people” »

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Committed To Accountability & Transparency

FSH Society is committed to excellence and accountability to our donors.

Milestones in Advocacy

FSH Society has been instrumental in rewriting (2001) and helping reauthorize (2008 and 2014) the Muscular Dystrophy Community Assistance Research and Education Act.

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