Category Archives: FSHD Stories

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

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.

The Moving Story of George Pollock’s quest to Race Across America

Board member George Pollock, who is racing across America this June to raise awareness and funds for FSHD, was featured in his high school’s magazine.  In the article, George discusses what gave him the idea to participate in the race, what keeps him up at night worrying, and what he hopes to come out of the race.  Read it here.

Source: Perspectives Spring 2017.

Susan Barclay’s 50th Birthday Challenge #Whistle4FSH

#Whistle4FSH has one goal—to find treatments for FSHD, the most prevalent type of muscular dystrophy, caused by a genetic mutation on chromosome 4. People with FSHD can not only lose the ability to walk, do simple tasks, or blink, but also be robbed of the ability to whistle or smile. WHISTLE FOR THOSE WHO CANNOT WHISTLE THEMSELVES.  We know you want to make a treatment a reality too—so #Whistle4FSH by:

  1. RECORD: Take a video of yourself or group whistling a few refrains from your favorite song to increase public awareness of FSHD;
  2. UPLOAD: Upload your video to social media, tagging at least four (4) family/ friends to engage and grow the message  (#Whistle4FSH);
  3. GIVE: Make a Donation to support Susan Barclay’s 50th Birthday Research Fundraiser;
  4. IT’S EASY – wet your whistle. video. post. tag. #Whistle4FSH

The Story
As Susan reflected on the next major milestone in her life, turning 50, her friend challenged her to “think of something you have always been afraid of doing and do it…just something crazy.” Continue reading

Picture of Trisha Sprayberry

My Boston Adventure: traveling solo with my wheelchair

Written by Trisha Lynn Sprayberry
Las Vegas, Nevada

My adventure began late Wednesday night, November 9, 2016. My fiancé, Erin, had dropped me off at the airport. With my suitcase in hand and a kiss to send me on my way, I was headed to Boston on a red-eye flight. I was attending my first patient conference, hosted by the FSH Society, and their inaugural #CureFSHD gala. It was at the grand Westin Copley Place Hotel in Boston, Massachusetts.

Continue reading

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

Barbara Chin leaves an enduring legacy

Barbara A. Chin (1945-2016)

We at the FSH Society were deeply moved and inspired to receive yesterday a magnificent bequest of $50,000 from the Barbara A. Chin Trust. This gift will enable the Society to fund work that Barbara cared deeply about: education and support for people with FSH muscular dystrophy, like herself and her late son Jimmie, and research toward treatments and a cure.

Barbara and her husband Jim, who serves on the Society’s Board of Directors, have supported the Society not only financially but through countless hours of volunteer service. Barbara changed the lives of many patients and families through her peer counseling. The entire FSHD community owes her so much. 

Barbara’s bequest helps ensure that future generations will enjoy lives free of the burdens of this disease. Individuals and families even of modest means can leave a powerful legacy by including the FSH Society in their will or estate plans. Continue reading

Looking Back on a Year Full of Strength, Part 3 of 3

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As we come up on the last days of 2016, we are taking one final look back on the incredible year it has been, and one last moment to recognize those who have shared their inspirational stories, strength, and commitment to continue to do the things that they love. As we mentioned in Part 1 and Part 2 on our blog, we are sharing stories we received throughout the year from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.

Your support is life-changing to those in the Society – and with your continued dedication to finding a treatments and a cure.

Continue reading below to hear the stories of Ryan, Aditya, and Lynne on how they are raising awareness, doing what they love, and how the Society has helped them along the way!

Continue reading