Host an Event

People Are Supporting the FSH Society in Creative Ways

These supporters have put a personal twist on their contributions to the FSH Society. Check out these ideas and be inspired to come up with an event that’s the perfect fit for you and your friends! Use our Fundraising Toolkit to jumpstart your event.

Annual Holiday or Birthday Letter. Peer-to-peer fundraising can magnify your impact SEVENFOLD!! Engage your family, friends, colleagues, and business network in becoming supporters for the FSH Society by sending out a holiday (or birthday) letter or email, or by setting up a Razoo page. Set a goal of how much you want to raise, and explain how your friends’ gifts will make a difference. If there’s a matching gift challenge, inform them their gifts will be matched dollar for dollar if they act before the deadline. We can help by providing donation envelopes, our FSH Fact Sheet and Customizable PowerPoint Slide Deck.

If you prefer to conduct your campaign electronically, you can set up a personal donation page on Razoo and enhance it with your own video message or by embedding one of our public service announcements on YouTube:

Team FSHD Cycling put the spotlight on FSHD by competing in the grueling, 3,000-mile Race Across America, accompanied by support vehicles covered with photos of FSHD patients from around the world. The goal: raise $101,000.

50th Birthday #Whistle4FSHD. Responding to a friend’s challenge, Susan Barclay decided to mark her 50th birthday by venturing out of her comfort zone and “outing” herself to friends about having FSH muscular dystrophy. She challenged them to make a video of themselves whistling and donating. Watch her video.

Piggyback Adventures. Carden Wyckoff and her brother are raising awareness and funds for FSH muscular dystrophy by undertaking bold and grueling events such as the Spartan Run and an 80-mile hike along the Appalachian Trail—with Carden riding piggyback on her brother’s back (with a little help from their friends).

Volley Ball Tournament. A positive and enthusiastic event for the FSH Society was held at East Brunswick High School in New Jersey. A big “thank you” to Russell Caratenuto, a junior at the school, and his coach, Gregory Rutz, and the team for spreading more awareness about FSHD.

New York City Marathon. Geoff Bello has run several marathons in the Big Apple in support of his friend Jeff Johnston, each time raising close to $20,000! While the FSH Society is not an official charity supported by the marathon, individuals can use the occasion to raise funds any way they please.

Beth Johnston and Judy Seslowe’s backyard picnic evolved into a gala concert that has raised over $300,000 in a single year.

Carden Wyckoff’s Holiday Stella & Dot Sale. College student Carden hosts a holiday trunk show of jewelry and accessories from Stella & Dot, which donates a portion of its proceeds to the Society.

Spicerfest Music Fundraiser. Jonelle Spicer brings together rock bands to perform at a popular bar. Ticket sales and auctions raise much needed funds for the FSH Society, and everyone enjoys a night of great music and dancing.KevinCupcake

Kevin Kirby’s End of Summer Pool Party. Kevin, a former competitive swimmer, raised funds by hosting a pool party. He has also thrown a “cupcakes and cocktails” party at a friend’s home, which drew FSHD patients and friends from far and wide.

Arlene Endres, Bear Creek Elementary School, Baltimore, Maryland. Since 1997, Arlene has held a read-a-thon at the Bear Creek Elementary School. The children read books and get contributions to benefit the FSH Society. Arlene has been active in the Society to fight for a cure for her daughter and all FSHD patients.

Justin Cohen’s Bar Mitzvah Project. Justin’s service project for his bar mitzvah grew into a fundraiser for the Society. He made note cards and sold them to raise funds. Other Society members helped with pictures, and a chain began that went on for months as Justin sold cards and distributed them to friends and family for purchase and further distribution. The project helped Justin communicate with others about his disease, involve other adolescents, and raise much needed funds. Justin inspired others, including a six-year-old in Washington State who began producing postcards to sell! He was also quite successful for the Society.

Laura and Paul Kampa, Tennis Fashion Show in New York. The Kampas hosted a tennis fashion show in their home in Northport, New York. In addition to admission to the event, they sold raffle tickets for a Chinese auction. They are close friends with a family whose son has FSHD.

Grace Corradino, Yard Sale on Fire Island. Grace’s annual yard sale is a spirited event on Fire Island and raises much needed funds for the Society.

Lee Childrens’ Birthdays and Grandparents’ Anniversary. The Lee children in California ask that gifts be made to the FSH Society instead of to them at birthday parties. In New York, the Lee grandparents ask guests attending their 50th wedding anniversary party to make gifts to the Society instead of to them.

A Kindergarten Teacher and Students Make a Quilt. In a town near Boston, a teacher helped her kindergarten class make an ABC quilt that they raffled at a local bank to benefit the Society. The teacher was motivated by her friend’s child who has FSHD.

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save