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Forget Me Knot Fundraiser

WHAT: Michelle and Dave Mackay’s annual Lake Party fundraiser for FSHD has gone virtual this year. Please watch her video!

WHEN: At your leisure between 1-31st August 2017

WHY: Michelle couldn’t make it to Michigan this year to see you all, but the fight continues.

Please help her achieve her $50,000 goal!  She and Dave will match 100% of all donations! Continue reading

In memorium: Richard Lefebvre, former FSH Society Board member

Former FSH Society board member Dick “Hap” Lefebvre passed away this past Saturday at the age of 70 from complications of FSH muscular dystrophy.  For those wishing to reach out to his wife Linda or his daughter Amy please click on this link to view his obituary and the details of Wednesday’s service.

Lefebvre was a seasoned health care professional with extensive operational experience in the health care industry within both profit and nonprofit sectors.  He retired from his position as the Group Vice President for Quorum Health Resources, the world’s largest organization that manages and operates hospitals.  Lefebvre was Secretary of the FSH Society Board of Directors from 1991-2007.  As an FSHD patient, he was interested in expediting a solution to the FSHD problem.  Mr. Lefebvre resided in Hudson, Massachusetts, with his wife, Linda.

“Dick had fine business acumen, was a prudent financial manager, and possessed a very dry sense of humor that dovetailed nicely with that of his fellow Board member, the late Bob Smith,” said Daniel Perez, CEO and CSO of the FSH Society. “Dick was a founding board member of the FSH Society, and the first Secretary of the Corporation.  His support and presence on the board was key to helping the Society grow in its early years.  He was ever present at the support group meetings in Massachusetts in the 1990’s and 2000’s.  I am saddened by his loss and will miss him.”

Richard Lefebvre Obituary

¡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.

“About FSHD” brochure is now available in Chinese!

Thanks to our friend and fellow FSHD advocate in China, Ning Baisheng, our “About FSHD” brochure has been translated and adapted for readers in China. Baisheng says patients in China face the same problems as patients everywhere, as few physicians know about FSH muscular dystrophy. This 

brochure is a valuable educational tool not just for patients and families, but also for their doctors. We encourage everyone to keep a small supply on hand to bring to their next doctors’ appointments. You are our best evangelists, to educate the medical profession!

If you would like a copy of the Chinese edition, please send your request to ningbaisheng001 @ 163.com.

FSHD Canada awards $20K for FSH Society research grant

Yi-Wen Chen PhD

The FSH Society is pleased to announce that it has received a grant of $20,000 from the FSHD Canada Foundation in support of an exciting, treatment-focused project, “Developing LNA-based therapy for facioscapulohumeral muscular dystrophy.”

 “We are delighted to help Neil Camarta and his colleagues at FSHD Canada help make a huge impact on FSHD by helping to fund high-quality research, both critical and necessary—in Canada and around the globe,” said Daniel Perez, President, CEO and CSO of the FSH Society. “Projects as this one are ideal for achieving the purposes of both our organizations and helping to provide insights and hope for the constituents we serve.”   Continue reading

Donate your used car or truck and get a tax deduction!

Wondering what to do with your used car or truck?

Used Car

Donating your old vehicle to the FSH Society, is convenient, easy, and may qualify you for a tax deduction. And best of all, your donation of a used car or truck will make a big difference in supporting our mission!

Donate your vehicle today!  We have partnered with Vehicles For Charity to process donated vehicles. All you need to do is to complete their SIMPLE ONLINE FORM or call 1-866-628-2277 and they’ll take care of the rest. They will pick up your vehicle, arrange to have your donation towed, and provide you with a tax-deductible receipt, all at no charge to you.

Continue reading

Bone health and FSHD

Photo credit: By Myohan at English Wikipedia, CC BY 3.0, https://commons.wikimedia.org/w/index.php?curid=17270224


Muscle plays an important role in bone health, and diseases such as Duchenne muscular dystrophy have been linked to low bone mineral density (BMD), abnormal bone turnover, and increased risk of fractures. It was not known whether FSH muscular dystrophy also affects bone health, and a new study published in Muscle & Nerve begins to address this question.

This is a topic that many FSHD patients worry about, because weaker muscles lead to more falls, and fractured bones take long recovery times. Reduced mobility, in turn, can further weaken muscles. Continue reading