Author Archives: RobynOleary

2017 RAAM Kickoff Dinner

Race Across America fundraising for FSH muscular dystrophy

June 15, 2017 from 4:00 – 7:00 pm
Urge Gastropub & Whiskey Bank
2002 S Coast Hwy, Oceanside, CA 92054

Please complete the form below to purchase tickets and/or make a donation. Receive a free ticket for collecting $150 or more in donations. Click here to download RAAM Fundraising Toolkit. Once you have collected the donations, please mail to FSH Society at 450 Bedford Street, Lexington, MA 02420 along with donor information.

Learn more about Team FSHD Cycling here!

Volunteers & Committees forming now for:
Raffles, Auction Items, Media contacts, Donations, Sponsors, Graphic Design
Contact: Amy Bekier at amy.bekier@fshsociety.org or (619) 972-0993

PLEASE NOTE: WE ARE CURRENTLY TESTING THE FORM BELOW.

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Search for Chief Executive Officer

The FSH Society is seeking a committed, experienced leader to serve as Chief Executive Officer (CEO). The CEO will lead the Society in meeting its important mission: to serve as a source of information and support for all patients and families with FSHD; to act as a driving force in the development of research directed towards treatment and cure of FSHD; and to act to bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities.

Please review the CEO Position Announcement for further details. If you wish to apply, please send your resume and cover letter to Susan Egmont, Egmont Associates.

 

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!

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