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Boston College Grad Partners with FSH Society for “Friend Support Hope” Fundraising Event
Date:4/22/2013

The couple now have two children.

Three years ago, the event morphed into a more traditional reception and auction. Last year, Stenmon raised a record $38,000 and he hopes to surpass that amount this year. Tickets for the event are $50. Attendees will receive a free T-shirt. In addition to enjoying appetizers and drinks from a cash bar, guests can bid on a variety of tantalizing silent and live auction items, including vacation packages, diamond jewelry, sports memorabilia and a helicopter tour.

Local companies have lined up to sponsor the event, including South Shore Fuel and Fawcett Oil, Saint Anthony Shrine, Eastern Bank Foundation, Premier Mortgage, Rogers Jewelry and Middlesex Bank.

Lori Haverty, a spin instructor at the Reading Athletic Club, along with fellow instructors at Body Infusions in Wilmington, have also gotten into the act, urging club members to join “spin-a-thons” to raise money for the event.

A half million people worldwide suffer from FSHD. 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 severe disability. Some patients endure hearing loss. The weakness spreads and worsens over time, and there is no effective treatment to stop or slow its progress.

Over the past three years, scientists have pinpointed the genetic cause of FSHD and are now hot on the trail of new drugs. “Through advocacy and research funding, our charity has helped to crack open the door on the cause of FSHD,” says June Kinoshita, Executive Director of the FSH Society. “We must put research on the fast tra
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