FSH Society Ranks among America’s Top Charities

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Dedicated to finding treatments for facioscapulohumeral muscular dystrophy (FSHD), the patient-driven FSH Society has been awarded Charity Navigator’s coveted four-star rating for the fifth year in a row.

FSH Society's Charity Navigator evaluation

We care especially deeply about being accountable to ourselves and the hundreds of thousands of patients and families affected by FSH muscular dystrophy.

Hard on the heels of its most successful fundraising year ever, the Massachusetts-based FSH Society, Inc., has earned the highest-possible rating from one of the nation’s premier charity evaluators.

For the fifth consecutive year, the FSH Society has received Charity Navigator’s four-star rating, placing it among the top-performing U.S. non-profit organizations. The rating indicates that the Society “adheres to good governance and other best practices that minimize the chance of unethical activities and consistently executes its mission in a fiscally responsible way,” Ken Berger, President and CEO of Charity Navigator, wrote in a congratulatory letter addressed to FSH Society President and CEO Daniel Perez.

“We are honored to receive this prestigious designation for the fifth year in a row,” said Perez. “The FSH Society represents the shortest path to treating this devastating disease, which affects many of our board members, staff, and our families. For this reason, we care especially deeply about being accountable to ourselves and the hundreds of thousands of patients and families affected by FSH muscular dystrophy. We value being recognized for being highly efficient and effective. This exceptional designation from Charity Navigator demonstrates to the public that the Society is worthy of its financial contributions and trust.”

In achieving the ranking, the FSH Society joins a select group of the less than four percent of charities that have achieved five consecutive four-star evaluations.

Forbes, Business Week, and Kiplinger’s Financial Magazine have all profiled Charity Navigator’s unique method of applying data-driven analysis to the charitable sector. The organization employs a two-dimensional rating system in its rankings, measuring both fiscal performance and accountability and transparency.

Based on information provided in IRS form 990, Charity Navigator analyzed The 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 perfect score of 70.

The FSH Society is the world’s largest grassroots network dedicated to developing treatments for Facioscapulohumeral Muscular Dystrophy (FSHD), which affects around 500,000 people worldwide. It is one of the most common muscular dystrophies, and between one and two percent of the general population carries a genetic risk factor linked to FSHD.

The disorder is named for the body areas that are typically affected: the face (facio-), shoulder blades (scapula-) and upper arms (humeral). The disease weakens muscles in these regions, making it difficult to blink or smile, or raise the arms overhead. FSHD can also affect leg and hips muscles, leading to falls, broken bones and dependence on a scooter or wheelchair. Some patients endure hearing loss.

FSHD advocates face an uphill battle to attract research funding and drug company investment. The disease is rare enough that many patients go undiagnosed and unaware that there are others with this disease. In addition to its programs for FSHD and investments in scientific research, the FSH Society offers a community of support, news and information for patients and families, as well as to anyone experiencing symptoms and in need of help locating qualified physicians to diagnose their condition.

The FSH Society can be contacted at 781-301-6060 and on the Web at http://www.fshsociety.org.

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June Kinoshita
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