Participants take part in the 2023 Walk to Defeat ALS event on the University of Pittsburgh at Johnstown campus. The event raised over $100,000. Courtesy photo

Jeremy Portash’s interest in the Walk to Defeat ALS began nearly two decades ago when his grandmother, Phyllis Connelly, died from the disease in 2005.

Today, the Portage resident is a committee member for the regional walk, and said the event brings people together every year to raise funds toward finding a cure for amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease, a progressive nervous system disease that gradually deteriorates the ability to walk, talk, swallow and — eventually — to breathe.

The ALS Association Western Pennsylvania Chapter’s half-mile walk in Johnstown will be held at 10 a.m. July 27 at the Pitt-Johnstown campus mall in Richland Township.

With nearly 40% of this year’s $110,000 goal raised so far, Portash said the money is also used by the ALS Association to make life “a little more sustainable” by providing treatment programs and patient care.

The ALS Association’s Walk to Defeat ALS has been held in numerous cities throughout the nation and has raised more than $223 million since it debuted in 2000, according to the association’s website.

Portash said participation in both the walk event and the overall fundraiser continues to grow every year. Last year, the fundraiser brought in $100,000 to support the ALS Association, in part thanks to sponsors like the UPMC Altoona Foundation, who are “a big help in everything we do for this walk,” he said.

Sharon Squillario, Portash’s aunt, retired from UPMC Altoona earlier this year and leads the Johnstown walk committee with about a dozen members. The walk is the “major fundraiser” but they have until October to reach their goal, she said.

Squillario said Connelly survived 18 months after receiving her diagnosis in spring 2004. She had a “very progressive” case of the disease, Squillario said.

“As soon as we contacted (the ALS Association), they did everything possible for my mom,” she said, noting the association also provides hospice care. “They got her a computer to help her talk. They had the equipment in the house to make it easy for her.”

Portash said, as the oldest grandchild in his family, he had “a very close relationship” with Connelly, who was his best friend. As a kid, he lived only a few minutes away from her house. Portash, his younger brother and his parents visited Connelly nearly every night, he said.

“Once she started to get sick and we figured out what was going on, we were there to help out as much as we could,” he said. “ALS is a very tough disease to deal with.”

According to Squillario, 28 teams have registered for the walk. Each team has members who fundraise to meet the team’s fundraising goal, she said.

As of July 15, “Team Phyllis” — Portash’s and Squillario’s team — has raised $3,474 of its $4,000 goal.

Other teams involved

Even while deployed with the U.S. Army in 2018, Johnstown resident Marie Hammer said she has walked in the event with her family for eight years in honor of her sister, Clara Pearce, who died from ALS on Jan. 21, 2016.

“We did (a video call), and as they walked in Johnstown, Pa., I walked in Iraq,” Hammer said.

Hammer is part of the team, “ALStriders for Clara,” which has 11 members on its roster this year and, as of Monday, has already raised nearly four times the amount of its $1,000 goal.

Hammer said the ALS Association assisted with training her sister’s caregiver, gave her a special motorized wheelchair and established hospice care. She said the association continues to send Christmas cards to her family every year.

Hammer said she remembers the “horrible feeling” of watching her sister “deteriorate” on New Year’s Day in 2016.

“You could see the pain in her eyes but she couldn’t talk or move,” Hammer said, adding there is no cure for ALS but recent breakthroughs in research has led to development of medications that can assist in prolonging an ALS patient’s life.

“That is why we walk,” she said, adding, “I always cry because I know there’s somebody there who’s not going to be there next year.”

Following the walk, there will be a basket raffle, Portash said, adding Froggy 95.5 FM morning show host Niki Wild will serve as the master of ceremonies.

People are not required to donate in order to participate in the walk or the festivities, Portash said. For those who do want to walk, early registration is available online at walktodefeatals.org. Participants can also register on site between 8 and 10 a.m.

Mirror Staff Writer Matt Churella is at 814-946-7520.