We Want You to #ShareYourVictory!

VictoryOver the past 25 years, we have had countless ambassadors and researchers accomplish amazing victories—all to spread awareness of FSHD and to bring us one step closer to finding a cure.

At this year’s Inaugural CureFSHD National Gala on November 11, we look to celebrate not just the victories of our tireless researchers and fearless ambassadors, but also the small (yet no less important) accomplishments that individuals with FSHD experience every day.

As amazing and inspirational as the stories of Carden and Spencer Wyckoff, Ryan Levinson, Lexi Pappas, David Lucas, Pierre, Meredith Huml, Trisha Sprayberry and countless others are, we know that our members experience their own victories every single day. Together, we are a Society of individuals determined to show the world that we are not limited by FSHD.

To celebrate the strength of our Society, please share your own personal victory with us by sending your photos, videos, and stories to Beth.Johnston@FSHSociety.org, or share them on Twitter, Facebook and Instagram by using the hashtag #ShareYourVictory.

We’ll share your victories during the CureFSHD National Gala, and will also be celebrating your triumphs on our website and on social media. We can’t wait for you to #ShareYourVictory with us!

What Would You Like to #AskTheResearcher?


For the past 25 years, countless researchers have dedicated their time and energy striving to find a cure for FSHD. Thanks to the work of researchers like Dr. Jeffrey Statland, Dr. Rabi Tawil and Peter Jones, PhD (just to name a few!), we are a strong community filled with some of the brightest minds in science.

At this year’s Patient Connect Conference on November 11, we want to open the floor for you to ask researchers your questions. Do you want to know what they’re working on? What the next big breakthrough may be? Now is your chance. Please send your questions to Beth.Johnston@fshsociety.org, or share them on Twitter, Facebook and Instagram by using the hashtag #AskTheResearcher.

We’ll present your questions to the researchers during the Q&A session at the Patient Connect Conference. We’ll also be sharing the questions and answers on the FSH Society website and our social media channels after the event.

Your Chance to Win Super Bowl 51 Tickets

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. Super Bowl 51

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!

One hundred percent of net proceeds from this auction will benefit the FSH Society. That’s what we call a Win-Win!!

Note: The exact location of the seats will not be known until closer to the Super Bowl date.

We are taking bids in absentia on this extraordinary opportunity – you can do this by one of the following options:

  1. You may provide the FSH Society with written instructions on your maximum bid and secure your bid by providing a signed proxy form by 12 noon EST, October 28th, 2016. The auction staff will bid on your behalf in increments above the next-highest bid until there is no one to out-bid you, or your maximum is reached, whichever comes first. If you don’t win the item, your deposit will be refunded in full.
  2. Live bidding by phone. Provide a phone number where you can be reached at 8:00 pm PACIFIC TIME on October 30th, 2016. A member of the auction staff will call you when the live auction begins, and you can participate in live bidding. Be ready to provide your credit card payment information if you were to win.

DOWNLOAD THE PROXY FORM, complete it and email it to Melanie@maximumnetevents.com.  You must have your form submitted and credit card information on file no later than 12 noon EST, October 28th, 2016. 

By placing this bid, you are entering into a binding agreement with the FSH Society to pay the amount bid, should you win.

Questions? Call Melanie Pollak, FSH Society’s Ghostly Gala Auction Manager, at 714-204-6183.

View more LA Ghostly Gala auction items HERE.

The FSH Watch 2016 Issue 2 is out!

Our newest issue of the FSH newsletter is here!  We’re so excited to share new scientific updates, patient stories, and the latest FSH Society initiatives.

Highlights include: fshwatchissue2cover

  • The creation of a Clinical Trial Research Network of universities, designed to speed the search for treatments for FSH (cover story);
  • Patient’s brother competes in American Ninja Warrior on NBC to raise awareness about FSHD (cover story);
  • The establishment of a new registry for FSH patients and family members to donate tissues for scientific research (page 3);
  • More Q&A with Dr. Rabi Tawil, discussing starting a family with FSHD, whether there is still a need for muscle biopsies, and how new guidelines might affect FSHD 2 patients (page 5);
  • A patient who takes on Chase Bank for discrimination in their loans (page 7);
  • A new Boston-area start-up begins testing biotech treatments for FSHD (page 8);
  • Chicago and South Florida patients start new FSH support groups (pages 10 and 12);
  • How to take advantage of the tax-advantaged savings accounts for family members with disabilities (page 15);
  • Interview with author and FSHD patient Belinda Miller (page 13).

Click here to read


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.”

Continue reading

Acceleron to host webcast on FSHD clinical trial

(Via BusinessWire.) Acceleron Pharma Inc., a clinical stage biopharmaceutical company focused on the discovery, development and commercialization of innovative therapeutics to treat serious and rare diseases, today announced that it will host an educational webinar on facioscapulohumeral muscular dystrophy (FSHD) and the Company’s Phase 2 clinical trial of ACE-083 in FSHD patients. The webinar will be led by neuromuscular disease expert, Jeffrey Statland, M.D., M.P.H., and Acceleron management, at 10:00 a.m. EDT on Friday, October 28, 2016. Continue reading

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 FSHDRSVP@gmail.com, or use THIS LINK.

Questions? Carden Wyckoff: 770-316-1900, or FSHDRSVP@gmail.com

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