Columbus Chapter of the FSH Society to host Walk & Roll for Facioscapulohumeral Muscular Dystrophy

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Event will raise public awareness and funds for this rare disease.

Susan Aumiller, co-organizer of the Columbus Walk & Roll to Cure FSHD, with FSHD researcher Scott Harper, PhD, of the Ohio State University.

The Columbus Chapter of the FSH Society is holding its first-ever Walk & Roll this September 15th. All are welcome.

Today, the FSH Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that its COLUMBUS CHAPTER will be holding its first-ever Walk & Roll to Cure FSHD in Dublin. The event, scheduled for September 15th at the Dublin Coffman Pavilion, advocates for research and 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 and 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 are dependent on scooters or wheelchairs. Our event is inclusive of everyone.”

The inaugural ‘Walk & Roll to Cure FSHD’ will convene participants beginning at 8:00 AM on the 15th. A 5K walk will commence at 9:00 AM from the Dublin Coffman Pavilion and will traverse through a beautiful country setting, around a pond and back to the pavilion. “There will be music and festivities for all!” said Susan Aumiller, co-organizer of the event. Aumiller, of Powell, OH. is director of the Columbus chapter of the FSH Society. “We thank all of our participants and generous sponsors—Bill Seibert, Greg and Elizabeth Gerhard, LCNB National Bank, Richard Wood, Sr., Hanger Clinic, CIVISTA BANK, Aumiller Strategies, The Winchester Institute, Schmidt’s Restaurant & Hospitality, and Nationwide Children’s Hospital’s Research Institute Center for Gene Therapy—for helping us reach our goal of $50,000,” she said.

Aumiller’s passion for this cause stems from the love of her family after her 36-year old son and husband of 40 years were diagnosed with FSHD last year. She reached out to the FSH Society to volunteer, and this July became director of the organization’s Columbus Chapter. She invites the community of Dublin and surrounding areas to share in the excitement and fun of this upcoming event.

“The Walk & Roll is first and foremost a fundraiser, generating critical funds to support the search for treatments and a cure, but it is about so much more,” said 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, register for the walk, make a donation, or become a sponsor, visit https://fshsociety.rallybound.org/ColumbusWalkandRoll.

About the Columbus Chapter
The Columbus Chapter of FSH Society was created to bring those who have FSHD as well as their caregivers and loved ones together for support and education.
Contact: Susan Aumiller, Chapter Director, (614) 738-4297
http://www.FSHSocietyColumbus.org

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. We have 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.

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June Kinoshita
@FSHSociety
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