A half-million people worldwide suffer from FSHD, one of the most common forms of muscular dystrophy.
Boston, MA (PRWEB) April 22, 2013
When Chris Stenmon made it onto the Boston College High School wrestling team, he was eager to prove his athletic prowess at the sports-loving school. Yet hard as he trained, he wasn’t getting stronger, and he eventually consulted an orthopedic surgeon at New England Medical Center.
"The surgeon took one look at me and left the room for five minutes and came back with a medical book with a picture of a teenager who looked very similar to me, with weak face, shoulder and upper arm muscles," recalls Stenmon. It turned out that he had facioscapulohumeral muscular dystrophy (FSHD).
The diagnosis came as a shock to Stenmon and his family. But he vowed to not let his disease pin him to the mat. Next Saturday, April 27th, for the 15th year in a row, Stenmon is rallying hundreds of friends to his “Friends Supporting Hope” fundraiser. This year’s event takes place from 7 PM to midnight at Florian Hall (Boston Firefighters Local 718), 55 Hallet Street in Dorchester. Fox 25 News Commentator Doug “VB” Goudie is presiding as emcee. The Boston-based band Fenian Sons will rock the hall with its popular Irish sounds.
In the 25 years since learning he had FSHD, Stenmon graduated from Boston College, became a C.P.A. and is now a Principal at the accounting firm O'Connor & Drew, P.C., in Braintree, MA. He also became active in the FSH Society, a national charity co-founded by another Boston-based FSHD patient, Daniel Perez. Saturday’s event will raise money for the Society, which funds scientific research on treatments.
“Friends Supporting Hope” got its start fifteen years ago when Stenmon decided to celebrate the end of tax season – a grueling time in his profession – with a “pub crawl” to generate funds for the FSH Society. He sold T-shirts and raised $1,000. Over time, the crowd snowballed. “One year I even met my future wife Ellen on the pub crawl,” he laughs. 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 track towards developing treatments.”
Stenmon now serves on the Board of Directors of the FSH Society, which he proudly notes was just awarded its fifth consecutive Charity Navigator four-star rating, ranking it among America’s top-performing charities. “Eighty-seven percent of the funds raised go to support scientific research and patient outreach,” he says. He vows that with the love and support from friends and family, he will continue to fight through this disease until a treatment is found.
Purchase tickets for “Friends Supporting Hope,” here:
Visit the event website for more information:
The FSH Society can be contacted at 781-301-6060 and through its website at http://www.fshsociety.org