Discovering the Cause and the Cure for FSHD
The FSHD Society was founded on the idea that we had to do something extraordinary to discover the cause and cure for FSHD.
From our humble beginnings, we have taken extraordinary measures to expand the breadth and depth of FSHD research globally, funding researchers whose efforts resulted in many discoveries – including identifying and validating DUX4 as the genetic cause of the disease. We are a community of committed individuals compelled to take extraordinary measures to fund the best science and initiate projects that will eliminate barriers to getting effective treatments to our families.
Together we play an oversized role in eliminating the obstacles to clinical trial success while working to provide a regulatory path for therapies aimed at halting FSHD.
Empowered by you, the FSHD Society funds scientific grants… and so much more:
Research Grants: This year we received 41 researcher-initiated proposals, nearly double the number in a typical year. While the pandemic negatively impacted many muscular dystrophy funding organizations, your steadfast support has allowed us to meet this “extreme need,” ensuring the best research will be funded and move forward. We have approved almost $2 million this year — extraordinary measures.
Therapeutic Accelerator Initiative: In consultation with pharmaceutical and academic researchers specializing in biomarkers, imaging, and trial-readiness, we design and implement projects through commercial research companies and academic labs to solve key gaps inherent in FSHD. This year we will invest approximately $1 million to move these initiatives forward — extraordinary measures.
Industry Partnerships: We are working with 15+ biopharmaceuticals providing necessary collaboration, connection, and consultation. Led by our Chief Science Officer, the FSHD Society works as a convener to bring academic researchers and industry together to encourage continued therapeutic development. We host the largest International Research Congress on FSHD and build funding alliances aimed at targeting and eliminating common obstacles — extraordinary measures.
Empowered & Engaged Community: Scores of volunteers across North America have stepped up to lead 33+ chapters. More than 20 countries participate in the FSHD Society-led World Alliance. This community participates in surveys, testifies before the FDA, and serves on biopharmaceutical advisory groups. This network is activating the powerful forces of an educated, empowered, and engaged community that will stop at nothing to facilitate treatments to our families — extraordinary measures.
Extraordinary Measures – Updating the standard of care for FSHD
by June Kinoshita, Director of Research and Patient Engagement Making sure that every person with FSH muscular dystrophy gets the best possible medical care is a high priority for us…. Read More »
Extraordinary Measures – Understanding the socioeconomic impact of FSHD
An aspect that is often overlooked during drug development is a cost-benefit analysis of a therapeutic treatment. Insurance companies often determine the level of coverage they are willing to provide… Read More »
Extraordinary measures – Educating doctors
by Jamshid Arjomand, PhD, chief science officer It can take nearly a decade for the average person with FSH muscular dystrophy to get a correct diagnosis. Once they are finally… Read More »
Extraordinary Measures – Many shots on goal
by Jamshid Arjomand, Chief Science Officer With a dozen or more potential FSHD therapies in the drug development pipeline, why is the FSHD Society continuing to invest substantial funds− a… Read More »
Extraordinary measures – An FSHD Society for everyone
by June Kinoshita, FSHD Society Our mission at the FSHD Society is to find treatments and a cure for FSHD—and then make sure everyone in the world who needs it… Read More »