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

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Castle Rock resident helps to launch nationwide event for this rare disease

Coloradans are ready to walk and roll for FSH muscular dystrophy.

Living with FSHD can be a lonely road. At the Walk & Roll, we realize no one makes the journey alone.

Today, the FSH Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that its Colorado Chapter will be holding its 3rd annual Walk & Roll to Cure FSHD in Castle Rock. The event, scheduled for September 8th at the Philip S. Miller Park, 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 are dependent on scooters or wheelchairs. Our event is inclusive of everyone.”

The 3rd Annual Colorado Walk & Roll to Cure FSHD event will take place at the beautiful Philip S. Miller Park on a paved, accessible path, according to Katie Ruekert, of Castle Rock. Ruekert is the founder and chair of the event. Registration opens at 8:00 AM. The walk and roll begins at 9:00 AM, and is followed by a pancake breakfast catered by Flippin' Flapjacks.

“We will have live music from local musician Sal Mancini,” said Ruekert. “Supportive vendors such as Rita's of Castle Rock, local children’s book author Lisa Reinicke and her team, as well as Amanda Hill from Beautycounter, will all be donating a portion of sales back to the event!” Attendees can enjoy face painting, a bounce house, and rewards for top fundraising teams and individuals, including weekend getaways to Vail, Breckenridge and Taos, New Mexico.

“I’m so grateful to our wonderful sponsors who help make this event possible,” Ruekert said. “With the generous support from our sponsors and all those who have registered and donated, we will be sure to reach our goal to raise $50,000.”

Ruekert’s passion for the cause stems from her own diagnosis at the age of 30. A wife and mother of two young kids, she was told by her doctor that she has FSHD in 2011. “I knew in my heart there were other ‘FSHers’ out there who felt alone with this disease like I did, and I wanted to change that,” she explained.

Ruekert realized she needed to be the change she was hoping to see. She proposed the fundraising idea to her local FSH Society support group and the Colorado Walk & Roll to Cure FSHD was created. The first Walk took place in 2016 and raised nearly $20,000. In 2017, the Walk raised $30,000. Starting this year, the Walk has gone national with four other cities hosting their inaugural Walk & Roll to Cure FSHD this coming September and October.

“The Walk & Roll is first and foremost is a fundraiser, generating critical funds to support the search for treatments and a cure, but it is also about so much more,” said the FSH 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

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The Colorado Chapter of the FSH Society was created to bring those who have FSHD as well as their caregivers and loved ones together for support and education. Contact: Amanda Hill, Chapter Director,

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

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June Kinoshita
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