A surprise $50K gift

From a simple act of kindness When Jim Chin, chair of the FSH Society board of directors, donated funds for travel scholarships so that 20 patients could attend our 2018 FSHD Connect conference in Las Vegas, he had no inkling of the dividends his gift would yield. $50,000 to be exact. That’s the amount of … Read more of “A surprise $50K gift” »

Tips and tricks for getting up after a fall

Check out this video by an occupational therapist demonstrating a variety of ways to get up off the floor after a fall. These require having some strength and might not work for everyone, but knowing these tricks could come in handy.

European centers to collaborate on FSHD ReSOLVE study

Three European centers have agreed to collaborate with the FSHD Clinical Trial Research Network on its NIH UO1 grant-funded projects, notably ReSOLVE. In doing so, they join eight US members of the CTRN. Funding sources for the network and the studies running on the network include: the FSH Society, Muscular Dystrophy Association, private philanthropy, National … Read more of “European centers to collaborate on FSHD ReSOLVE study” »

An update from Mark Stone

Yesterday, FSH Society President and CEO gave a special webinar to update our major stakeholders on the progress of the Therapeutic Accelerator initiative and answer their questions. We’re delighted to share the recording of this webinar with you.

Finding FSHD: the story of DUX4 in a zebrafish

by Amanda Hill, Highlands Ranch, Colorado When studying human disease and working to develop treatments, researchers typically perform experiments on animal models that represent the disease in a controlled laboratory setting. However, in the case of FSHD, creating an animal model which accurately represents the human disease has proven difficult. One reason is that FSHD … Read more of “Finding FSHD: the story of DUX4 in a zebrafish” »

Fulcrum Acquires Global Rights to a Potential Disease-Modifying Therapy for FSHD

From Fulcrum Therapeutics press release. Fulcrum plans to launch a Phase 2b clinical trial in FSHD in mid-2019 CAMBRIDGE, Mass., April 23, 2019 – Fulcrum Therapeutics, a biotechnology company focused on discovering and developing therapies to rebalance gene expression, today announced an exclusive worldwide license agreement with GlaxoSmithKline (GSK) for development and commercialization of the … Read more of “Fulcrum Acquires Global Rights to a Potential Disease-Modifying Therapy for FSHD” »

FSH Society Radio on Living, Loving, Caring, Sharing

Join us via Facebook Live on Wednesday, April 24, at 9:00 pm Central / 10:00 pm Eastern time (note change of time) for our conversation with Drs. Ora and Isaac Prilleltensky about sustaining healthy, honest relationships with family and friends while living with a chronic condition.  Ora Prilleltensky, PhD, obtained her doctorate in counseling psychology from … Read more of “FSH Society Radio on Living, Loving, Caring, Sharing” »