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“Into the Light” – The story of the FSH Society

Produced for the FSH Society’s 25th anniversary, our new documentary tells the story of how the Society’s work has led to the discovery of the genetic cause of facioscapulohumeral muscular dystrophy and brought patients out of the darkness into the light. We premiered the film at our CureFSHD gala on November 11.

To all the patients, families and friends who have supported the Society through the years, this is your story. Please share this with others to help them understand what FSHD is, the great progress that has been made, and how their support can lead to a brighter future for tens of thousands of patients.

Living with FSHD: Katy Kat in the Hat (Video)

Ellen Feldman, filmmaker, created this documentary about a woman she met who has FSH muscular dystrophy. “Katy Kat in the Hat is a story about a woman who defies all odds after being diagnosed with FSH muscular dystrophy at the age of 21,” Feldman said. “Katy’s muscles may be weakening but her spirit becomes stronger. Despite her degenerating condition, she continues to find new solutions to live her life full of adventure in the Colorado Rocky mountains. She surrounds herself with nature, music, animals, and good friends everywhere she goes. She takes every problem and turns it into a challenge. Katy Kat in the Hat is so full of adventure, when you first meet her you will think she is a character straight out of a Doctor Seuss book.”

FSH Society receives its 9th 4-star Charity Navigator rating


We just received news that the FSH Society has earned its ninth consecutive 4-star Charity Navigator rating!

We’re now in the top 1% of all U.S. charities! According to Michael Thatcher, President and CEO of Charity Navigator, “Only 1% of the charities we rate have received at least 9 consecutive 4-star evaluations, indicating that FSH Society outperforms most other charities in America. This “Exceptional” designation from Charity Navigator differentiates FSH Society from its peers and demonstrates to the public it is worthy of their trust.” A 4-star Charity Navigator rating is described as “Exceeds industry standards and outperforms most charities in its Cause.” Continue reading

FSH Society honors leaders in science and advocacy

Dr. Silvere van der Maarel accepts 2017 FSH Society Pioneer as Michael Altherr looks on.

Dr. Silvere van der Maarel accepts 2017 FSH Society Pioneer as Michael Altherr looks on.

On November 11, the FSH Society honored four distinguished researchers and community members at their inaugural CureFSHD National Gala in Boston, Mass. The event, hosted by WBUR’s Morning Edition Host Bob Oakes, celebrated 25 years of progress towards finding a cure for Facioscapulohumeral Muscular Dystrophy (FSHD). The gala, which attracted more than 250 researchers, scientists, FSHD patients and supporters, was considered a great success by attendees and organizers alike. Continue reading


gourdsautumnleavesThe evening of the CureFSHD Gala on November 11, 2016, in Boston, Massachusetts, was one of those magical moments when we were overcome with gratitude for the generosity, courage, and life-affirming energy of our community. Over 250 patients, families, researchers, doctors, and benefactors had gathered to celebrate the FSH Society’s 25th year. We premiered the short documentary, “Into the Light,” which chronicles the long, arduous journey that has brought us from a world where FSHD and those who live with it were in the dark, to a place illuminated by knowledge and hope. Continue reading

FSH Society will keep an eye on Washington DC

Photo by Victoria Pickering and used here with Creative Commons license.

Photo by Victoria Pickering and used here with Creative Commons license.

The recent national election, bringing in a new Administration, raises questions and concerns about the future of laws and programs of interest to researchers, patients and caregivers dealing with FSHD. While it is impossible to foresee the possible changes, we want to assure you that the FSH Society will be closely monitoring the impact on funding and policy changes. Continue reading

Holiday Notice

Please note that our office will be closed on the following dates:

  • Thursday, November 24, 2016
  • Friday, November 25, 2016
  • Friday, December 2, 2016
  • Monday, December 26, 2016
  • Monday, January 2, 2017

We apologize for any inconvenience and thank you for your understanding. Have a wonderful, safe and happy holiday season!

#GivingTuesday is Just Around the Corner!

Join us on Tuesday, November 29, 2016 as we participate in the fifth annual #GivingTuesday!

Giving Tuesday Save the Date

Entering its fifth year, #GivingTuesday is a global day of giving fueled by social media and collaboration following the widely recognized shopping days of Black Friday and Cyber Monday. Known as the unofficial kickoff to the giving season, every year philanthropies are celebrated and communities around the world join together with the common goal of encouraging giving to a worthy cause.

Continue reading

Help us advance FSHD research by taking our survey

Take the survey now! Click here.

The FSH Society is participating in an international workshop on FSHD patient registries later this week. We would like to share the patient and family perspective on registries with the experts attending the workshop. Not sure what a registry is? No worries! By taking the survey, you will learn. (If you are not an FSHD patient or family member, please disregard this survey.)

Current registry data is valuable to researchers, but we need to ensure that data of value to patients is also collected, so we need to hear from you. Including information that patients find helpful and interesting will increase the value of future registries, and give researchers insight into patient needs and desires.

Please take a few minutes to respond to our survey. Deadline, 11:59PM on Tuesday November 15. We appreciate your help!