FSHD Society

Our Promise
As long as we are here, no patient need ever face this disease alone. And with generous donations from patients, families, friends, major donors, and sponsors, the FSHD Society will keep working to accelerate research leading to treatments.

Our Mission
Find treatments and a cure for FSHD while empowering our families.

Our Core Values
Research | Community | Urgency

Accelerate research to expedite treatments and a cure
• Knowledge: Act as a driving force in the development of research directed toward treatment and a cure for Facioscapulohumeral muscular dystrophy.

Enlarge, engage, & empower an active community
• Empower: Mobilize patients and communities to take action
• Connect and Communicate: Serve as the leading source of information and support for all patients and families with FSHD.

Leverage & expand resources to support the Mission

Ensure organizational capacity to accomplish the Mission
• Finance: Grow and diversify revenues to invest in research, education, patient support, and operational capacity.

The FSHD Society has a network of scientists and researchers who specialize in FSHD. Guided by its world renowned Scientific Advisory Board, the Society's grants have led to key discoveries: the genetic origins of FSHD and its unique mechanism. We are now on the path to drug discovery that will lead to treatments and a cure of this disabling disease! To accomplish this we launched an initiative to accelerate therapeutic development by focusing on the reduction & elimination of obstacles inherent in FSHD clinical development and regulatory approval of promising therapies.

Additionally, one of the FSHD Society's key missions is to provide engagement & empowerment to a growing, active global community. This enables us to help FSHD patients, families and caregivers improve their quality of life, regain a sense of control, and avoid isolation. Our implementation of a Global Chapter & Affiliate initiative, utilizing volunteer directors in over 30 local areas, will continue this immeasurable service to accomplish our mission.

FSHD is becoming more recognized as one of the most prevalent hereditary progressive muscle disorders and affects one-half million people, both children and adults, worldwide. The prevalence of FSHD is stated to be 1:8,000 individuals

FSHD is an autosomal dominant disease that can affect entire family constellations. It is recognizable initially by muscle wasting and weakness in particular muscle groups e.g. (face – facio, shoulders -- scapula, and upper arms – humerus), and subsequently by atrophy and wasting in multiple muscle groups such as lower body, legs and torso and al skeletal muscles later in the disease). The disease has a high burden of disease and brings with it significant disability and even premature death in affected individuals. Due to FSHD Society funding progress is measurable by rapid advances in understanding the molecular genetics and cellular biology of FSHD have led to the identification of potential therapeutic targets.