Main Line Event To Support People Battling Rare Neuropathic Diseases

WAYNE, PA — Wilson Farm Park in the Wayne section of Tredyffrin Township will host a community event to support people suffering from rare neuropathic diseases.

The Conshohocken-based GBS | CIDP Foundation Saturday is holding the Philadelphia Walk & Roll from 9 a.m. to 1 p.m. in Wilson Farm Park in Wayne.

This event is a gathering to support patients living with Guillain-Barré Syndrome, CIDP, and related neuropathic conditions, as well as raise funds to better research these illnesses.

Guillain-Barré Syndrome is a rare disease that can lead to nerve damage, progressive numbness, and potentially lethal paralysis. It's unclear what exactly causes GBS, which is why raising funds for research through the Walk & Roll is so crucial.

It affects up to 6,000 Americans every year. Bob Whiteside, of Norristown, is one of them.

Whiteside was diagnosed with Guillain-Barré Syndrome (GBS) in 2021.

"I thought it was a heart attack," he said of the first onset of symptoms, which started in his arms rather than his feet, which is typical for early GBS patients.

He and his wife Evelyn Whiteside rushed to a local hospital, and he was sent home that same day. The next day, however, he was unable to walk.

"There was no warning," he said.

"It was pretty heart-wrenching," Evelyn Whiteside said.

Zachery Chopek, the foundation's coordinator for Walk & Roll events, said GBS hits quickly.

"You'll be walking, feeling ok," he said. "Then you feel tingling in the feet, then legs."

Next comes a loss of motor function, and many patients slowly become paralyzed.

Bob Whiteside said he felt like he had heavy work gloves on his hands when his symptoms were at their worst.

It can get to the lungs, which requires patients to be intubated on respirators, he said. This can happen within an hour, according to Chopek.

GBS is often misdiagnosed, which can lead to serious issues, as its more severe symptoms can be mitigated by an early diagnosis and speedy treatment, Chopek said.

The walk not only does that, but it also serves as a hybrid networking-support group event.

Bob Whiteside has since regained his ability to walk, as well as resumed many of is activities of daily living, including driving short distances.

But when he was learning to walk, he used the Walk & Roll as a target goal to get back on his feet.

"I came out of rehab in a wheelchair and said I was going to walk [in the Walk & Roll] even if I couldn't do the whole thing," he said.

And what is so special about Walk & Roll events is it is often other patients' first time walking after their diagnosis while connecting with others who suffer from GBS and similar illnesses, as well as their families and caregivers.

"She works harder than I do," Bob Whiteside said of his wife.

"I work differently," Evelyn Whiteside joked.

She said the journey they have been on has led to some post-traumatic stress. So connecting with not just patients, but those close to them, offers camaraderie and new insights into the care they provide.

"Often, it's first time people meet others with these diseases," Chopek said of the Walk & Roll. "It can be life changing. At these events, people can relate, feel less alone, and share stories. That's the biggest part of this event."

"It's kind of like a big family," Bob Whiteside said. "They bring theirs, we bring ours."

And the Whiteside's new family has grown. Through the foundation, Bob Whiteside has become a go-to resource for people newly diagnosed with GBS and similar illnesses.

"It's a big net of people," he said of who contacts him for insight when they receive their diagnoses. People all over Pennsylvania and New Jersey reach out to him as some of their first step upon learning about the disease.

"We've found people mostly want to talk about what they're going through," he said.

And Saturday's event will facilitate those conversations.

Chopek expects 150 to 200 people will participate in the Walk & Roll, at which will be various healthcare providers, local organizations, and national groups all with goals of helping people suffering from these illnesses

Signup to participate online here.

Wilson Farm Park is located at 500 Lee Road in Wayne.

Learn more about The GBS | CIDP Foundation online here or by calling 610-667-0131.