The 11-step challenge

At the close of 2018, two adventurers accomplished what heretofore was thought impossible – they each traversed Antarctica solo, unaided, on foot.  One of these intrepid souls, Louis Rudd, when asked what he did to keep going, retold a story about Robert Falcon Scott’s 1912 failed attempt. Someone had calculated that had Scott taken “just … Read more of “The 11-step challenge” »

Industry collaborative workshop on FSHD clinical trial readiness

Yesterday, the FSH Society convened a landmark meeting at the Tommy Douglas Conference Center, a stone’s throw from the headquarters of the Food and Drug Administration (FDA). Several FDA regulators attended in addition to researchers from seven biopharmaceutical companies, academic scientists who are leading the effort to prepare the field for clinical trials, and representatives … Read more of “Industry collaborative workshop on FSHD clinical trial readiness” »

Fighting for life insurance

Excerpt from Howard Chabner’s forthcoming memoir: I tried to find life insurance but brokers told me I was uninsurable because of my FSHD.  Finally one broker found a company willing to issue a policy, an affiliate of Mutual of Omaha called United of Omaha.  But it quoted a premium nearly double the standard premium for … Read more of “Fighting for life insurance” »

Outstanding FSH muscular dystrophy care in Connecticut

By Kathy Senecal, Connecticut chapter director   Last week some members of the FSH Society and I attended the Community Advisors Gathering at the Hospital for Special Care in New Britain, CT. The presenters were: Lynn Ricci, President and CEO; Wendy DeAngelo, Vice President of Development and Communications; and  Dr. Kevin Felice, Chief of Neuromuscular … Read more of “Outstanding FSH muscular dystrophy care in Connecticut” »

Team FSHD Skyland Trail will compete in the 2019 Race Across America

From PRWeb The FSH Society and Skyland Trail today announce that they are jointly entering an eight-person team in the 2019 Race Across America (RAAM) to raise funds for their respective causes. The two non-profit organizations, one focused on facioscapulohumeral muscular dystrophy (FSHD) and the other on mental health and suicide prevention, joined forces to tackle the grueling, 3,000-mile … Read more of “Team FSHD Skyland Trail will compete in the 2019 Race Across America” »