Category Archives: Blog

Our Manhattan Project

Matthew Harms MD

The FSH Society’s March 11, 2017, meeting in Manhattan was a milestone in our efforts to nurture a network of stakeholders in one of our most concentrated urban centers. Hosted by FSH Society Board member Stuart Lai, this meeting featured two stellar speakers, Matthew Harms, MD PhD, of Columbia University College of Medicine, and Jia-Ray Yu, PhD, a postdoctoral fellow working in the world-renowned laboratory of Danny Reinberg, of the Howard Hughes Medical Institute at New York University Langone School of Medicine.

Two dozen patients and family members from New York City and beyond attended. For many, it was their first time meeting others with FSH muscular dystrophy. Continue reading

Double Your Donation… Easily and Free!

Corporate Matching Gifts: Does Your Company Match Your Donation?

Did you know many companies offer a matching gift program to encourage philanthropy among their employees?  And that some companies will even match to spouses, retirees, and board members?

By simply completing the matching gift form from your employer, you may be able to double, or even triple, the impact of your gift!

Click the button below to find out if your company will match your gift:  matching-gifts-red

If you do not find your employer listed, please check with your company’s Human Resources department to see if your company offers a matching gift program. Continue reading

FSH Society Awards $541,133 in Funding for FSH Muscular Dystrophy Research

Boston-based Non-profit Awards New Grants to Facilitate Search for a Cure

BOSTON – April 5, 2017 – Today the FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced it has committed $541,133 in funding to five 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 in 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 and CEO of the FSH Society. “With these grants we look to build upon our record-breaking 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.”

The following proposals submitted in August 2016 were approved: Continue reading

Win a Horizon Off-Road Electric Trike: Bid Now!

The revolutionary Outrider Horizon Trike could be yours!
Bids accepted until 12 noon ET April 11th, 2017

We are auctioning off a Horizon Off-road Electric Trike – model 210A, an adaptive, all-terrain electric trike that can be customized for riders of all abilities. This revolutionary Horizon Trike will be shipped to you right off the production floor, and can be customized to your specifications. Check it out in the video above! Only a limited number are in production so the only way you can get your hands on the extraordinary Horizon is to bid on it by April 11th, 2017!

ElectricBike.com says “This counts as my favorite test ride of any production electric bike ever…Outrider trikes are so much fun to ride, that anyone spending a day on one in the right terrain will probably not forget that day for the rest of their life.”

The Trike was donated by one of the initial backers of the trike’s successful Kickstarter campaign, so 100 percent of this sale will go toward supporting the FSH Society’s mission! Continue reading

Update on Clinical Trial A083-02: a Phase 2 Clinical Study of ACE-083 in FSHD

The FSH Society has a long history of partnering with biotech and pharmaceutical companies to facilitate recruitment of patients and families for focus groups, provide patient input to clinical outcome measures, and participation in clinical trials. The Society also assists companies by providing connections, insights and scientific information in the research, therapeutic and clinical areas. For the ongoing trial of ACE-083, the FSH Society has worked with the drug’s developer, Acceleron Pharma, to better understand how FSHD affects patients through a survey (see story here) as well as to educate patients about the process of enrolling in the clinical trial. In response to the high degree of interest in the ACE-083 trial, Acceleron has worked with the FSH Society to provide the following update and FAQ. We thank Acceleron for the company’s commitment to patient education. Continue reading

FSH Society Talk Radio launches first episode

FSH Society Talk Radio host Tim Hollenback

We have launched a new service for our members, an internet radio show that will feature guest interviews and live on-air Q&A with our listeners. Hosted by Tim Hollenback, the show will stream live over BlogTalkRadio on the last Wednesday of every month, at 9:00 pm EST / 8:00 pm CST.Listeners can call into the live shows to ask questions and join a chat session with other listeners for real-time socializing, networking, and support. Episodes will be recorded and available as podcasts after the shows.

Listen to our pilot episode, an interview with FSH Society executive director June Kinoshita, who answers questions about current research, clinical trials, and the FSH Society’s role in supporting and educating the FSHD community.

The FSH Society Spring Watch is out!

The FSH Society is pleased to announce their Watch Newsletter for Spring 2017. Featured in the Watch are articles about

  • FSH March 2017 Watch CoverHighlights from the FSH Society’s 2016 International Research Conference (page 1)
  • Young Hollywood comes out in support of the Los Angeles Ghostly Gala (cover story)
  • New FSHD family cell lines being released for research after 30 years in limbo (page 3)
  • Cognitive-Behavioral Therapy and exercise’s ability to slow muscle degeneration (page 4)
  • Team FSHD Cycling’s Race Across America (page 15)
  • How to find Free Money, from our Development Officer, Beth Johnston, in her advice column “Ask Beth” (page 5)
  • A cancer drug that might point the way toward a treatment for FSHD (page 6)
  • Accessibility hacks, mobility aids, and tips (page 8)
  • Two FSHD mouse models (pages 12 and 17)

And much more! To read the full Watch, click here.

Mom and Daughter with FSHD featured in Muscular Dystrophy News!

Diane and Lexi PappasTwo of our members, Diane and Lexi Pappas, were featured in Muscular Dystrophy News, sharing their struggles about living with FSHD.  Diane is Lexi’s mother and the two live in Massachusetts.  Lexi shares both the difficulty she had about opening up about her disease and the sense of liberation she has gained from raising awareness: “It’s actually really freeing, knowing that all these people know about my disability.  It means I don’t have to hide it anymore.  The more awareness I can spread, the more research we can get for the FSH Society.”

Diane says this condition has made the two of them closer through their shared experience: “My daughter has actually inspired me to be more open about our disease and she is definitely braver than I ever was growing up.”  Both Diane and Lexi talk about attending the FSH Society’s patient conference last November and the challenges of living with FSHD.  For the whole story, read here.

FSH Society Supporters Dr. Michael Kyba and Marge Brchan Share Their Story With FOX 9 Minneapolis

Over the weekend, supporters of the FSH Society Dr. Michael Kyba of the University of Minnesota and patient Marge Brchan shared their amazing story with Leah Beno of FOX 9 Minneapolis.

To watch the broadcast video clip, click here.

After being diagnosed at 19 years old, Brchan has battled the effects of FSHD most of her life. “It was very hopeless,” said Brchan. “They knew very little about the disease. There wasn’t anyone focusing on the disease. Basically, each year you find you lose more and more ability to lift, to walk.” Continue reading

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.

Continue reading