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FSH Society Ranks among America’s Top Charities
Date:4/8/2013

ation 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 dia
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