Fshd Society

Fshd Society

Randolph, MA 02368
Tax ID52-1762747

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About this organization






The FSHD Society is the world’s largest patient-driven organization for facioscapulohumeral muscular dystrophy, or FSHD, one of the most prevalent forms of muscular dystrophy. We are laser-focused on speeding the development of treatments and a cure for the nearly one million people worldwide who are affected. We do so by investing in research initiatives that will move us further faster; by activating and empowering patients, families and their allies; and by mobilizing resources from industry, government, and other organizations around the most efficient and effective strategy to speed up therapy development.


Research the society seeks to accelerate research to expedite treatments and a cure for FSHD muscular dystrophy. Organizing and funding research into the causes of FSHD, and, ultimately developing treatments and a cure, is the society's core mission.

Interesting data from their 2019 990 filing

According to the filing, the non-profit's mission is “To increase awareness, understanding of, and conduct research on facioscapulohumeral muscular dystrophy.”.

When referring to its actions, they were described as: “Increase awareness, understanding of and conduct research on facioscapulohumeral muscular dystrophy.”.

  • According to the law, the state of operation reported by the non-profit is DC.
  • As per the filing, the address of the non-profit for 2019 is 450 BEDFORD STREET, LEXINGTON, MA, 02420.
  • According to their form, the non-profit as of 2019 has a total of 8 employees.
  • Is not a private foundation.
  • Expenses are greater than $1,000,000.
  • Revenue is greater than $1,000,000.
  • Revenue less expenses is $29,479.
  • The organization has 17 independent voting members.
  • The organization was formed in 1991.
  • The organization pays $878,259 in salary, compensation, and benefits to its employees.
  • The organization pays $370,662 in fundraising expenses.

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