Category Archives: Fundraising events

Help us promote World FSHD Day with a selfie video!


World FSHD Day

Help us raise public awareness of FSH muscular dystrophy by making a video selfie, urging everyone to take part in this year’s World FSHD Day awareness campaign. Orange Slice SmileRaisingAware

Orange is the international color of World FSHD Day – so we’re using an orange slice to spread the word. All you need to do is make a short video of yourself sharing the message using the script below. Feel free to adapt the script to your own style and voice. Try to get good audio quality, then send your video by DropBox to Continue reading

Win a Horizon Off-Road Electric Trike: Bid Now!

The revolutionary Outrider Horizon Trike could be yours!
Bids accepted until 12 noon ET April 11th, 2017

We are auctioning off a Horizon Off-road Electric Trike – model 210A, an adaptive, all-terrain electric trike that can be customized for riders of all abilities. This revolutionary Horizon Trike will be shipped to you right off the production floor, and can be customized to your specifications. Check it out in the video above! Only a limited number are in production so the only way you can get your hands on the extraordinary Horizon is to bid on it by April 11th, 2017! says “This counts as my favorite test ride of any production electric bike ever…Outrider trikes are so much fun to ride, that anyone spending a day on one in the right terrain will probably not forget that day for the rest of their life.”

The Trike was donated by one of the initial backers of the trike’s successful Kickstarter campaign, so 100 percent of this sale will go toward supporting the FSH Society’s mission! Continue reading

2017 RAAM Kickoff Dinner

Race Across America fundraising for FSH muscular dystrophy

June 15, 2017 from 4:00 – 7:00 pm
Urge Gastropub & Whiskey Bank
2002 S Coast Hwy, Oceanside, CA 92054

Please complete the form below to purchase tickets and/or make a donation. Receive a free ticket for collecting $150 or more in donations. Click here to download RAAM Fundraising Toolkit. Once you have collected the donations, please mail to FSH Society at 450 Bedford Street, Lexington, MA 02420 along with donor information.

Learn more about Team FSHD Cycling here!

Volunteers & Committees forming now for:
Raffles, Auction Items, Media contacts, Donations, Sponsors, Graphic Design
Contact: Amy Bekier at or (619) 972-0993


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Auction: Orlando 2-bedroom luxury condo for the holidays!


We just received word of this 2BR condo at Orange Lake Resort in Orlando, Florida, available for two prime vacation weeks: Christmas week (Dec. 23-30, 2016) and New Year week (Dec. 31, 2016-January 6, 2017). These one-week timeshares are being auctioned now on eBay. 100% of the sale price is being donated to the FSH Society. Perfect holiday gift for the family! Don’t let this one get away. Spread the word to friends and acquaintances! Check it out and place your bids:

  • December 23 to 30, 2016, bid here.
  • December 31, 2016, to January 6, 2017, bid here.

Your Chance to Win Super Bowl 51 Tickets

Super Bowl 51UPDATE: Remote/Proxy bids will be accepted until 12 noon PT, October 30th, 2016. Live Auction Sunday, October 30th, 2016, 8:00 PM PT at the LA Ghostly Gala!

Two tickets to Super Bowl 51 NRG Stadium, Houston, Texas on Sunday, February 6th, 2017.

This is an extraordinary opportunity to bid on 2 tickets to Super Bowl 51, offered as a LIVE Auction item at our 2nd annual Ghostly Gala in Los Angeles! Continue reading

Carden and Spencer Wyckoff to Set off on Piggyback Adventure through the Appalachian Trail

FSH Society Ambassador Carden Wyckoff and her brother Spencer are at it again! This time, they will be traveling 79-miles through the Georgia portion of the Appalachian Trail to raise awareness and funds to cure FSHD.

piggyback adventures

Throughout the hike, sponsored by Vestigo, Spencer will be carrying his sister Carden on his back using a specially designed harness. Their father, Kurt, and sister, Virginia, are also set to join them on the adventure to spread the message that no matter what physical limitations are placed on you anyone can reach their goals.

“Being able to walk with someone on your back is an intrinsic reward,” says Spencer. “We are looking to prove that this journey, carrying someone on your back for 79 miles, is not impossible, and that Carden and others do amazing things themselves every day.”

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Atlanta Kickoff Event October 15th, 2016!

If you live in the Atlanta area, join us for a casual dinner and cocktails as we begin planning our next fundraising event!

Atlanta Gathering InvitationThank you to Meredith & Mica Maddry who have agreed to host our get-together at their home:  1423 Lachona Ct. NE Atlanta, GA  30329

SATURDAY, OCT 15th, 2016 at 7PM

Please RSVP to, or use THIS LINK.

Questions? Carden Wyckoff: 770-316-1900, or

Meredith’s home is wheelchair accessible with an accessible restroom. Though the driveway is fairly steep, the carport at the top of the driveway will remain open for drop-offs and pick-ups in front of the ramp entrance to the home. Parking is available on the street.

Contribute to this event HERE.

See you there!

2016 Festive Evening of Song – A Stay-at-home Event

screen-shot-2016-10-05-at-6-31-58-pmThe Festive Evening Concert Committee invites you relax in your most comfortable chair to join us for a stay-at-home concert to benefit the FSH Society.

Featuring: Musical favorites accompanied by a delicious wine

When: At your leisure

Where: Chez vous

Attire: Glamorously comfortable

For patients, the day they will have a treatment cannot come fast enough. Your support will help speed our progress. Please make a generous gift! Continue reading

Walk & Roll to Cure FSHD

The FSH Society’s Colorado Committee hosted their first ever local fundraiser on Saturday September 10, 2016 – a 5K WALK & ROLL at Phillip S. Miller Park in beautiful Castle Rock, Colorado!

Thanks to all of our participants, sponsors, and donors, we are proud to say we generated nearly $19,000!

Walk & Roll to Cure FSHD

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