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, 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

CFC - Combined Federal Campaign

The CFC (Combined Federal Campaign): Pledging to the FSH Society

If you are a Federal employee, you are most likely aware of the Combined Federal Campaign, or CFC. It is the official workplace giving campaign of the Federal government.

Pledges made by Federal civilian, postal, and military donors during the campaign season support eligible nonprofit organizations that provide health and human service benefits throughout the world.

How can you help? If you are a Federal employee or know someone who is, please consider directing your support to the FSH Society when making your pledge to the CFC. Our CFC number is 10239. Continue reading

Q&A with Dr. Rabi Tawil, Part 2


Dr. Rabi Tawil.

This is a continuation of our Q&A session with Rabi Tawil, MD, co-director of the MDA Neuromuscular Disease Clinic at the University of Rochester, New York, and lead author of the first evidence-based care guideline for FSHD, a project the FSH Society supported through consultations and advocacy. Summaries of the guideline can be downloaded at

Part 1 of our session was published in FSH Watch 2016, Issue 1, and is available here.

Q: I was wondering if you could give us some options that are available for FSHD Type 1 females who may be interested in starting a family?

Dr. Tawil: One of the difficulties with FSHD is that the genetic test for FSHD needs a lot of DNA, and so this precludes doing what we call pre-implantation genetic diagnosis (PGD), except in certain situations. Continue reading

FSHD Tissue Registry FAQs

ndri_brochurecoverThe FSH Society is excited to announce the launch of the FSHD Biospecimen Registry, the first nationwide Facioscapulohumeral Muscular Dystrophy tissue registry. The registry, created by the FSH Society in partnership with the National Disease Research Interchange (NDRI), establishes a way for patients to arrange to donate tissue in advance of surgery and postmortem, and ensures that the tissue will be delivered to qualified FSHD researchers.

Muscle and other tissues from FSHD patients and relatives are truly precious and vitally important for the advancement of research. It is extremely difficult for researchers to obtain this tissue. Without sufficient access to patients’ tissues and cells, scientists will not be able to fully understand the biological mechanisms of FSHD and test strategies to treat the condition. 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

Continue reading