Inaugural Walk & Roll Campaign a Tremendous Success!

by LEIGH REYNOLDS, Kansas City, Missouri When we began planning for the inaugural Walk & Rolls to Cure FSHD, a $105,000 fundraising goal felt ambitious. Then an incredible group of volunteer leaders stepped up to pioneer this national campaign in five communities across the US. They worked tirelessly to make magic happen, and their dedication, drive, … Read more of “Inaugural Walk & Roll Campaign a Tremendous Success!” »

And the new ICD-10 code for FSHD is…

The new ICD-10 code for Facioscapulohumeral muscular dystrophy is G71.02.  The International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) is a system used by physicians and other healthcare providers to classify and code all diagnoses, symptoms and procedures recorded in conjunction with hospital care in the United States. Codification means a disease is assigned … Read more of “And the new ICD-10 code for FSHD is…” »

Lexi Pappas’ story of filmmaking and FSH muscular dystrophy

Filmmaker Taylor Toole takes us inside the world of Lexi Pappas, a fellow documentarian who lives with a condition called facioscapulohumeral muscular dystrophy (FSHD). Last year, Lexi’s own documentary about her family’s four-generation journey with FSHD, went viral. Learn about the remarkable woman behind the camera.

The use of antioxidants in FSHD

What is the scientific rationale and what does the evidence show? by Adam Denny, PhD In recent years, scientists around the world have begun to investigate the role of oxidative stress in FSHD. A 2018 study reported that muscle biopsies from people with FSHD had greater levels of oxidative stress markers when compared to healthy … Read more of “The use of antioxidants in FSHD” »

Ghostly Gala laughter for a cure

Our 2018 Ghostly Gala, held on October 21 at Los Angeles’ fabled Cicada Club, raised awareness and funds for FSH muscular dystrophy. This year’s theme was comedy, laughing for a cure. Wendy Liebman presided as the mistress of ceremonies. She has appeared on Letterman, Leno, Kimmel, Fallon, HBO, and America’s Got Talent. She currently produces … Read more of “Ghostly Gala laughter for a cure” »

FSH Society latest grant awards

By Daniel Paul Perez & June Kinoshita One of the blue-sky dreams for those of us working toward treatments for FSH muscular dystrophy is regenerative therapy—treatments to generate healthy muscles to restore or replace those damaged by disease. We have taken an important step toward realizing this dream with our latest grant award for a … Read more of “FSH Society latest grant awards” »