We need a cure, and I am passionate about being a part of finding it in any way I can.
CARY, N.C. (PRWEB) September 27, 2018
Today, the FSH Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that its North Carolina chapter will be holding its first-ever Walk & Roll to Cure FSHD in the Raleigh-Durham area. The event, scheduled for Sunday, October 7th, 2018, at Fred G. Bond Metro Park in Cary, advocates for public awareness and is raising funds to support the Society’s work.
The FSH Society’s mission is to accelerate the development of therapies while empowering individuals affected by FSHD. “Our goal is to deliver a treatment or cure to our families by the year 2025,” declared the Society’s President and CEO, Mark Stone.
FSHD is among the most prevalent of the nine primary types of muscular dystrophy affecting adults and children. The genetic condition is estimated to affect 870,000 individuals worldwide and causes progressive weakness, typically in the face, shoulder blade, arms, legs, and torso, but may affect almost any skeletal muscle in the body. There is currently no treatment or cure and approximately one-quarter of patients become dependent on wheelchairs.
“Our event is called the ‘Walk & Roll’ because FSHD can affect individuals very differently,” explained Beth Johnston, Chief Community Development Officer of the FSH Society. “Some people may have weakness in the upper body but can still walk and run. Others require a scooter or wheelchair to get around. Our event is inclusive of everyone.”
Co-organizer Meredith Huml of Angier, NC, invites the community to join in the excitement and fun of the inaugural Walk & Roll to Cure FSHD. The event will embark at 10:00 AM, with check-in and registration opening at 9:00 AM.
“The timing has never been better," said Huml. "We need these types of community events - not only to raise awareness of FSHD, but to raise capital that is urgently needed for researchers to find a cure."
Huml, now 24, developed symptoms as a young child and was diagnosed as a teenager. Her progressive muscle weakness forced her to give up her beloved ballet. After years of mourning her loss, she has found a fulfilling career as a disability rights advocate. Her younger brother Jonathan, a student at University of North Carolina Chapel Hill, was diagnosed with FSHD and has progressed more rapidly, to where he needs a wheelchair.
Event supporters Michael and Melissa Penwell, of Cary NC, said “We are so grateful for the tremendous work being done by the FSH Society and are looking forward to joining many of our friends at this event to help raise awareness and much needed funds to help find a cure for FSHD.”
Michael and Melissa’s twin daughters Alexa and Taylor, now 18, were both diagnosed in their early teens. Alexa was the first to notice symptoms when she was in middle school. She was playing competitive soccer for both her club team and her school when she started have difficulties keeping up with training. Over the next 4 months, Alexa visited numerous specialist and was finally diagnosed with FSHD. In that short time, she had gone from playing competitive soccer to being unable to run without falling down.
“We need a cure, and I am passionate about being a part of finding it in any way I can,” said Huml.
“The Walk & Roll is first and foremost a fundraiser, generating critical funds to support the search for treatments and a cure, but it is also about so much more,” said the Society’s Johnston. “On event day, for a few hours, we all join together as one. Living with FSHD can be a lonely road. At the Walk & Roll, we realize no one makes the journey alone.”
To learn more and register for the walk, visit Fshsociety.rallybound.org/NCWalkandRoll.
About the FSH Society
The FSH Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. The Society has catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The FSH Society has transformed the landscape for FSHD research and is committed to making sure that no one faces this disease alone. The Society offers a community of support, news, and information through its website at https://www.fshsociety.org.