Category Archives: Blog

FSH Society awards over $600K for new research

Dr. Michael Kyba (right) is among the recipients of an FSH Society grant.

The FSH Society has awarded grants totaling $616,467 to seven research projects submitted for the February 2017 grant cycle. This brings total research funding by the Society for 2017 to $1,167,260. 

To learn more about the projects that are receiving this new support, visit Grants We have Funded.

¡El folleto “About FSHD” ya está disponible en español!

Estamos muy contentos de anunciar que About FSHD, nuestro folleto esencial para todos los pacientes, familias, proveedores de atención primaria y otros, ha sido traducido al español. Damos las gracias a Manuel Gómez y al Dr. Alberto Rosa por su generosa ayuda. El folleto está disponible en formato descargable aquí.


Gimpy girl goes birding

A 2017 mid-Atlantic, physically accessible birding “Big Year”

by DEB CALHOUN, Frederick County, Maryland

Midsummer last year, I became determined to fight back against FSH muscular dystrophy. Most of my friends and family know I have FSHD. This isn’t a new diagnosis, and living fully with this disease has kept me determined and also sensitive to the challenges everyone faces throughout a lifetime. As my FSHD progressed rapidly the last few years, I allowed my world to become too small. I wanted to find ways of living a bit more boldly and pursuing (at least!) one more great passion.

I’ve been passionate about birds and birding since childhood. However, in recent years, birding has become an increasingly important part of my day and a constant source of great joy. Drawing inspiration from fellow birders, I decided to challenge myself to a 2017 mid-Atlantic, physically accessible birding ”Big Year.” Continue reading

Hot off the press: FSH Watch

The latest issue of FSH Watch is here! Highlights:

  • Clinical Trial Research Network receives major NIH award
  • World FSHD Day 2017
  • FSHD Family Day Conference in Columbus, Ohio
  • Bone health and FSHD
  • FSH Society’s congressional testimony
  • Why I donated tissue
  • Ask the physical therapist (part 3)
  • How can I use a planned gift to support the FSH Society?
  • New FSH Society grants
  • A Segway for mobility

Download the issue here.

A Segway for mobility

by TOM THOMPSONCharlotte, North Carolina

From left, Barbara Thompson, Tom Thompson, and Beth Johnston.

The first time I ever saw a Segway I immediately recognized it as something that could possibly help my mobility. My FSHD had progressed to the point where I was having difficulty walking.

At my first opportunity I went to a Segway dealership to try one. It was an amazing machine, but I was disappointed that I couldn’t ride it very far without getting tired due to the fact that it is designed to be operated only while standing. If only it had a seat!

I began to think about how I could make a seat that I could adapt to a Segway. I tried finding a local person or company that could help me fabricate one but without any success.

One day a thought came into my head: Maybe someone already has created a seat. I googled “seat for Segway” and was surprised to find three or four different seats. After some research and phone calls, I decided to purchase a Segway and order one of the seats. Continue reading

Clinical Trial Research Network receives major award from NIH

by June Kinoshita 

Dr. Jeffrey Statland

The FSHD Clinical Trial Research Network (CTRN), which was launched last year with a $121,000 grant from the FSH Society, has received a UO1 award from the National Institutes of Health. The project will receive $469,642 for the first year. Additional funds, up to a total of nearly $2.7 million, will be released upon reaching annual milestones. The principal investigators are Rabi Tawil, MD, of the University of Rochester, and Jeffrey Statland, MD, of the University of Kansas.

“The support of the FSH Society and a private donor helped us establish the infrastructure necessary to propose such a study, and the continuing support will be essential not just for this study, but for future efforts toward creating new outcome measures, developing new therapies, and training the next generation of FSHD researchers,” said Statland. Continue reading

Our new Physical Therapy brochure

Hot off the press, here’s our updated Physical Therapy brochure! Co-written by leading FSHD experts Katy Eichinger, PhD, Shree Pandya, PT, DPT, MS, and Wendy King, PT, the brochure provides an excellent review of the literature on PT and exercise and practical guidelines for patients and therapists. If you would like to order copies, please send your postal address to You can also download the brochure here (but it’s worth having a supply of the printed ones to share with your PT, family members, etc.).

Our San Francisco Concert and Patient Meeting is right around the corner!

Join us for our annual San Francisco Concert and Conference, given in memory of Joyce Hakansson.

Don’t miss our FSHD Family Day Conference and Songs in the Key of Steven Blier benefit concert on Saturday, July 15, at San Francisco’s Jewish Cultural Center. This is the Bay Area’s premier FSHD networking and advocacy event! Our conference provides an exceptional opportunity to hear from pre-eminent FSHD researchers including Peter Jones, PhD, and John Day, MD PhD, about clinical trials and cutting-edge research. There will also be a wealth of “news you can use” about physical therapy, respiratory health, FSHD care standards, orthotics, and navigating the legal and insurance systems.

Following the conference, stay on for our annual benefit concert, a magical evening showcasing the esteemed pianist and song meister Steven Blier, joined by rising stars Amanda Lynn Bottoms and Dimitri Katotakis. You will enjoy a delicious dinner and dazzling silent and live auctions, presided over by our master of ceremonies, Emmy Award winning radio & TV personality Liam Mayclem, best known as the host of EYE ON THE BAY on KPIX 5 and  as “The Foodie Chap.” 

Important deadlines:

Jewish Community Center of San Francisco

3200 California Street
San Francisco, CA 94118

Disclaimer:This is not a program of the JCCSF. The views expressed are those of the FSH Society and/or its affiliates and guests.


SHIFT Communications wins PCNE Bell Ringer Award for American Ninja Warrior Campaign

We are proud and honored to announce that our PR/marketing partner SHIFT Communications earned a Publicity Club of New England Bell Ringer Award!

A Silver Bell was awarded for our Nonprofit Communications Campaign bringing attention to two of our top ambassadors, Carden and Spencer Wycoff. Spencer participated in NBC’s America Ninja Warrior in June 2016 to raise awareness for his sister Carden, who has FSH
muscular dystrophy, and the Society. Together, the two helped to bring our mission to the show’s millions of viewers, for which we could not be more grateful. We never could have achieved this honor had it not been for their commitment to raising awareness of the disease!

We are so thankful for passionate ambassadors like Carden & Spencer, and we are honored to work with the equally passionate and talented team at SHIFT to share their stories in an award-winning fashion. We share this award with all of you!