Ohio FSHD Family Day Conference

Strengthening our network in the Midwest

The FSHD Family Day Conference, hosted by Nationwide Children’s Hospital and the FSH Society on June 11, 2017, drew about 70 patients, families, researchers, and clinicians to Columbus, Ohio. The half-day meeting provided an opportunity for two of the nation’s leading FSHD research centers to share expertise and research advances with patients and families in the region. Patients and caregivers shared their observations and experiences of living with FSHD. Continue reading

FSH Society awards over a half million dollars for new research

The FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced this spring that it has committed $550,792 in funding to six research projects that aim to break new ground in the search for a treatment and cure for FSHD. These grants follow the Society’s record-breaking $1.36 million awarded for total research funding in 2016.

“These grants are a testament to the dedication of researchers within the FSHD community committed to understanding and solving how FSHD works through high-quality peer-reviewed research,” said Daniel Perez, president, CEO & CSO of the FSH Society. “With these grants we look to further increase our understanding of the inner workings of FSHD and build upon our success in 2016, which would not have been possible without the generosity and sustained support of donors, Society management and staff, our Board members, and volunteers.” Continue reading

FSH Society Talk Radio with Dr. Charis Himeda

Charis Himeda, PhD.

LIVE on Wednesday, July 26, 2017, 9:00 pm EST / 8:00 CST. LISTEN HERE!

Our guest this month is Charis L. Himeda, PhD, Research Assistant Professor at the Center for Molecular Medicine at the University of Nevada, Reno School of Medicine. She has worked in the fields of myogenesis and muscle disease for many years, and is currently using cutting-edge technologies to examine mechanisms of epigenetic dysregulation in FSHD muscle cells and explore potential avenues of therapy.  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 kathryn.puzzanghera@fshsociety.org. 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.).

Fourth Annual Songs in the Key of Steven Blier (PHOTOS)

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We had a wonderful Bay Area FSHD Family Day conference with speakers from Stanford, UC Davis, University of Nevada Reno, followed by a lovely gala auction and concert featuring the luminous Amanda Lynn Bottoms and Dimitri Katotakis, singing their hearts out with our beloved Steven Blier. Thank you to all who helped, supported, participated! This is how we build and strengthen our community!

Why I donated tissue

by MAUREEN EYE Centerport, New York

In November of 2016, I underwent scapula fusion surgery in Baltimore, Maryland. During that surgery I had the privilege to donate muscle tissue for FSHD research.

The donation itself was relatively simple. The paperwork prior to the surgery was minimal and mainly taken care of by the doctor’s office. The procedure itself was included as part of my overall surgery, and did not cause any further pain or loss of mobility.

Several months prior to the surgery, June Kinoshita from the FSH Society reached out to me to ask if I would be interested in donating muscle tissue taken from my surgery. It wasn’t even a question in my mind. Without hesitation I committed to donating muscle. Continue reading

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.


FSH Society Talk Radio on mindfulness in coping with FSHD

LISTEN LIVE HERE Wednesday, June 28, 2017, 9:00 pm EST / 8:00 pm CST

Our guest is Carol S. Birnbaum, MD, a psychiatrist in private practice in Cambridge, Massachusetts. She is a tireless advocate for the Society as an advisor and liaison with patients and families. In 2011, Dr. Birnbaum lost her mother to complications related to FSHD. She is eager to promote the Society in its search for a cure and to offer support and guidance for patients and their families. On our show, she will respond to questions and comments shared by our Facebook communities. She will also be available to answer you questions on-air. 

Carol is a graduate of Bryn Mawr College and the University of Connecticut School of Medicine. She completed her residency in psychiatry and a fellowship in biological psychiatry at Massachusetts General Hospital, and is a graduate of the Boston Psychoanalytic Society and Institute. She resides in Cambridge, Massachusetts, with her husband Adam, a chef, and two sons.

Call into the show with your questions at 949-270-5953 (dial 1 to speak live on air) or use the chat room and the host will read them on air.

Team FSHD Cycling crosses the finish line!

And here they are, our champions! Team FSHD Cycling at the Race Across America finish line in Annapolis last night! We couldn’t be more proud, and humbled, by this incredible feat of planning, grit, athleticism, and heart. The team traversed 3,143.9 miles in eight days, braving blistering desert heat and thunderstorms. On behalf of the entire FSHD community, THANK YOU. 

With gratitude to all the companies that generously sponsored Team FSHD Cycling!

New documentary tells one family’s story about FSH muscular dystrophy

FSH Society ambassador Lexi Pappas has just completed her first film documentary, based on her family’s multigenerational experience living with facioscapulohumeral muscular dystrophy. We learn how FSHD affects individual members of her family in different ways. The documentary is a powerful, personal “coming out story” about Lexi’s courageous decision to open up about her condition and why it is so important to become an advocate. The film is dedicated to her late grandfather, Edward Norris, a long-time benefactor of the FSH Society. We know he would be so proud. Thank you and kudos, Lexi!

Here is Lexi’s blog post about her documentary.