The FSHD Society is launching a new chapter for families with early-onset FSHD (also called infantile FSHD). Led by Ally Roets, the chapter will meet virtually to serve people everywhere who have affected family members. Early-onset FSHD is defined by facial muscle weakness before the age of 5 and shoulder/arm weakness by age 10. Children… Read More »
Calling all parents of early-onset FSHD children
FDA grants fast track designation to Losmapimod
From Global Newswire. Read full release. CAMBRIDGE, Mass., May 12, 2021 (GLOBE NEWSWIRE) — Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases, today announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation to losmapimod for the potential treatment of… Read More »
Tips for FSHD Travelers
by Rich Holmes, Sandwich, Massachusetts With growing numbers of people getting vaccinated against COVID-19, many are looking forward to being able to travel again. But traveling with a disability imposes challenges too. On the FSHD Society Wellness Hour of April 12, 2021, guest speakers Ray Jordan and Carden Wyckoff shared travel tips and considerations. Both… Read More »
A researcher’s journey into FSHD
In this FSHD University Webinar from April 15, 2021, Angela Lek, PhD, a research scientist at Yale University School of Medicine, speaks about how her husband’s diagnosis with limb-girdle muscular dystrophy led to the scientific couple’s interest in the genetics of muscle-wasting diseases. She gives an engaging and outstandingly lucid explanation of the biology… Read More »
David Younger on managing difficult emotions
“I no longer live at the mercy of my mind,” says David Younger, PhD, a psychologist who has lived with the physical decline that comes with his diagnosis of facioscapulohumeral muscular dystrophy. The benefits he has gained from meditation and mindfulness training are not just theoretical, but part of his lived experience. In this FSHD… Read More »