“Ninety percent of the members of our Board of Directors are personally affected by FSHD, so we care deeply about being accountable to the thousands of patients and families,” said Perez. “We are delighted that we have been recognized for being highly efficient and effective. This exceptional designation from Charity Navigator demonstrates to the public that the Society is worthy of their trust.”
Based on information provided in IRS Form 990, Charity Navigator analyzed FSH Society’s performance in seven financial metrics: program expenses, administrative expenses, fundraising expenses, fundraising efficiency, primary revenue growth, program expenses growth, and working capital ratio. It also evaluated the organization in several accountability and transparency performance metrics, giving the Society an overall rating of 68.5 points out of a maximum score of 70.
Around 500,000 people worldwide have FSHD, and between one and two percent of the population carries a genetic trait that places future generations at risk of FSHD. Funding from the FSH Society paved the way for the recent discovery of the genetic mechanism of the disease.
There is now an intensive global effort to find treatments, and scientists say these breakthroughs in FSHD research could carry over into cancer, diabetes and other illnesses affecting hundreds of millions of people.
Despite the scientific waves that FSHD is making, many physicians remain unfamiliar with the disease, leaving thousands of patients undiagnosed and unaware that there are others who share their plight. In addition to investing in scientific research, the FSH Society offers a community of support, news and information for FSHD patients and families through its website at
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