Puyallup Herald

First-ever Washington event benefiting those with muscular dystrophy is coming to Puyallup

Carlos Romero, right, with Linda Taylor, left, and Noah Linsky, center, who supported Romero when he competed in the ParaClimbing World Championship. Romero, who was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) when he was 28, inspires 5-year-old Noah, who has infantile FSHD.
Carlos Romero, right, with Linda Taylor, left, and Noah Linsky, center, who supported Romero when he competed in the ParaClimbing World Championship. Romero, who was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) when he was 28, inspires 5-year-old Noah, who has infantile FSHD. Courtesy

A new fundraiser has come to the South Sound for the first time, and its organizer hopes to make it an annual occurrence.

The Facioscapulohumeral Muscular Dystrophy (FSH) Society will host Walk & Roll to Cure FSHD at Bradley Lake Park in Puyallup, bringing participants into the area from around the Pacific Northwest.

Nancy Payton, a Puyallup resident who serves on the board of directors for FSH Society, said the event raises money for one of the most prevalent forms of muscular dystrophy.

“My goal with this is, No. 1, to increase awareness,” said Payton, who organized the Puyallup event.

FSHD is the most prevalent of the nine primary types of muscular dystrophy affecting adults and children, with more than 870,000 people diagnosed worldwide.

“The prognosis for FSHD includes a loss of muscular strength that limits both personal and occupational activities, and approximately one-quarter of patients over 50 years of age require the use of a wheelchair,” according to the FSH Society website.

Payton, whose son Tyler has FSHD, said working toward treatment and a cure for the genetic disease is close to her heart.

The effects of FSHD vary by person, but most people develop signs of muscle weakness between their 20s and 30s.

That was the case for 66-year-old Bob Louden, who started noticing something was off in college.

“I went to reach and grab something and my hand wouldn’t lift up,” said the Renton resident.

Louden was diagnosed with FSHD at 28. His father had the same diagnosis.

BobLouden (2).jpg
Bob Louden, 66, was diagnosed with facioscapulohumeral muscular dystrophy when he was 28. He now works with others to raise awareness and support for finding treatment and a cure. Nancy Payton Courtesy

“I knew it was coming, so it gave me the opportunity to mentally prepare, physically prepare and financially prepare,” Louden said.

The diagnosis is a struggle for many.

Louden and Payton met at community group for those with FSHD. It’s also how Payton met 34-year-old Carlos Romero, who lives in Seattle.

Romero was also diagnosed with FSHD in his late 20s. Despite the disease’s theft of muscular strength, Romero trained in rock climbing, winning first place in the ParaClimbing National Championships in 2014.

“If you’re capable of doing something and you’re not doing it, go do it anyway,” he said.

After sharing his story online, Romero raised enough money to go to the ParaClimbing World Championships the following year, where he took 11th place. He said he couldn’t have done it without community support.

“A lot of the support came from the FSH community online,” Romero said. “It’s a really close community.”

It’s the same idea with the first annual Pacific Northwest Walk & Roll to Cure FHSD, which follows about 5 kilometers of trails throughout Bradley Lake Park. Participants register for the event online and can give donations that supports treatment. Already, the effort has raised $12,000.

Payton, Romero and Louden all plan to be at the event.

When Patyon’s son Tyler was diagnosed with FSHD, she vowed to do whatever she could to increase others’ awareness, from painting rocks with #CureFSHD and hiding them around Puyallup to hosting community groups, and now the fundraiser.

“When (Tyler) was diagnosed, I made it my mission that people are going to know what (FSHD) is,” she said. “I won’t give up until there’s a treatment or a cure. I really won’t, as a mom.”

About the event:

What: Walk & Roll to Cure FSH Muscular Dystrophy

When: 8 a.m. check-in; walk starts at 9 a.m. Saturday, Sept. 22

Where: Bradley Lake Park, 531 31st Ave SE, Puyallup

More information: fshsociety.rallybound.org/PNWWalkandRoll; fshsociety.org

Allison Needles: 253-597-8507, @herald_allison
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