Boston College Grad Partners with FSH Society for “Friends Supporting Hope” Fundraising Event

For the 15th year in a row, Chris Stenmon rallies his friends and family in the fight against facioscapulohumeral muscular dystrophy (FSHD). This years event will be held on April 27th at Florian Hall in Dorchester.

Boston, MA (PRWEB) April 22, 2013

"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 years 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. Saturdays 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.

Read the rest here:
Boston College Grad Partners with FSH Society for “Friends Supporting Hope” Fundraising Event