Talk Radio: From finance to fashion with Curt Calder

Join us on June 27th, 9:00 PM EST / 8:00 PM CST for a live, on-air interview with Curt Calder, co-founder of AnsonCalder, a leather accessories company that weds artisan materials and fine craftsmanship with minimalist, functional designs inspired by his experiences as a busy finance professional living with FSH muscular dystrophy. You can stream the show … Read more of “Talk Radio: From finance to fashion with Curt Calder” »

World FSHD Day backstory

Italian brothers’ ordeal sparks a global movement As we approach our third annual World FSHD Day this June 20th, and the international FSHD community plans to flood their social channels with messages and images to bring attention to the day, we’d like to share the backstory of how June 20 came to be World FSHD … Read more of “World FSHD Day backstory” »

FSH Society Announces Third Annual World FSHD Day, Taking Place on June 20, 2018

The FSH Society is excited to celebrate the Third Annual World FSHD Day and join the global effort to raise awareness to FSHD on June 20, 2018. To build on our successes of the past two years, we’re calling upon you—our biggest supporters—to spread the word! We ask that you join us along with members … Read more of “FSH Society Announces Third Annual World FSHD Day, Taking Place on June 20, 2018” »

FDA orphan drug designation for Genea Biocells’ FSHD drug candidate

Genea Biocells, a San Diego-based biotech company focused on drug development to treat neuromuscular diseases, today announced that it has been granted Orphan Drug Designation by the U.S. Food and Drug Administration (FDA) for its therapeutic candidate, GBC0905, for the treatment of facioscapulohumeral muscular dystrophy (FSHD). Scientists from Genea Biocells will be attending the FSH … Read more of “FDA orphan drug designation for Genea Biocells’ FSHD drug candidate” »

Walk Pioneers Lead the Way!

This September and early October, the FSH Society will host its new signature fundraising event, the Walk & Roll to Cure FSHD in five communities from coast to coast.  These Volunteer Leaders are paving the way for their communities to raise funds and increase awareness! 5 Brave Walk Pioneers have agreed to attend monthly training sessions, beta-test … Read more of “Walk Pioneers Lead the Way!” »

Rochester FSHD Family Day videos

Watch the videos here. The University of Rochester Fields Center for FSHD Research has posted a summary and videos from the 6th annual FSHD Family Day Conference held on April 7, 2018. Jointly sponsored by the University of Rochester, Leiden University Medical Center, and the FSH Society, the meeting presented the latest developments in FSHD … Read more of “Rochester FSHD Family Day videos” »