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Tuesday, May 21, 2024
The Observer

Neuroscience Club to hold eighth annual ALS Walk

Participants in the Neuroscience Club’s seventh annual ALS Walk gather to initiate their march at the Jordan Hall of Science.

The Notre Dame Neuroscience Club will conduct its eighth annual ALS Walk Sunday morning from 10 a.m. to noon at the Jordan Hall of Science reading room.

Amyotrophic lateral sclerosis (ALS), sometimes known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that primarily causes the loss of voluntary muscle movement in the body, which in turn may lead to the inability to speak, eat, move or even breathe independently. There is no known cure.

Though the Neuroscience Club typically focuses on promoting its titular field and its accompanying advancements and breakthroughs, the club also has had a lengthy history of research advocacy, fundraising and spreading awareness for neurological disorders — all of which it hopes to achieve with the walk. All donations received through the event will be given to the ALS Association in St. Joseph County. This money will go directly towards supporting victims of the disease and their caregivers.

The event will start off with a small breakfast, with coffee, bagels and pastries available. During this time, several speakers will share with the audience the unique experiences and hardships they faced regarding the disease. Patrick “Murf” Murphy, a long-time bartender at Rohr’s, and Denis O’Leary will talk at length about their friend William “Bud” O’Toole, a former University pilot who recently passed away after a ten-year battle against ALS. John Roselle, an alumnus of the University, will speak on his wife Laurie, who was diagnosed with ALS two years ago. Following this, Fr. Gabe Griggs, alumnus and rector of Keough Hall, will commence this year’s Walk with a prayer before sending the participants off.

Participants will march throughout campus and around St. Mary’s Lake before stopping at the Grotto, where a group prayer and a reading of the names of those in the Notre Dame family struggling with ALS will be held. They will then reconvene at the Jordan Hall of Science for closing remarks.

To Neuroscience Club co-president and senior Joseph Deporre, the ALS Walk demonstrates the power of community.

“It’s quite striking in how we were able to make such a widespread impact together,” Deporre said of last year’s walk. “We had people not even related to the Notre Dame family, but just from the St. Joseph County area, come in and walk with us. To get so many students, professors and community members together, behind such a hugely important cause … it speaks volumes.”

To expand that community, the Neuroscience Club has partnered with the Notre Dame Club of St. Joseph County. Additionally, junior Mackenzie Kelleher, former co-president and current ALS Walk chair, has advertised the event across campus through newsletters and posters alike.

“It’s both sobering and inspiring,” Kelleher said. “It gives you a really profound insight into the lives of the patients and their families and friends, showing what they’re really going through. To join a cause spreading awareness like that really makes you feel like you’re a part of something bigger than yourself.”

Senior Cade Whitsitt, who was secretary of the club during the time of the walk last year, also found the experience to be an impactful one.

“Spreading awareness of increasingly prevalent diseases like ALS in a way that combines both religion and research advocacy really fits in with what a member of the Notre Dame family should strive to do,” Whitsitt said.

John Roselle, a speaker at the Walk and an active member of the Notre Dame club in Indianapolis, got involved with the cause after his wife’s diagnosis, which lead the couple to the Live Like Lou Foundation, an ALS nonprofit founded from the famous first baseman’s former fraternity. Through the group, they held their first annual “All in for Laurie” trivia night last year, raising more than $37,000 in support of ALS victims and research. Reaching out to Notre Dame, they then enabled an endowment with the Live Like Lou Foundation to fund undergraduate neurodegenerative disease research.

Laurie and John Roselle stand smiling in support of Notre Dame at a late-night football game.

“It was only natural that our thoughts would go to Notre Dame,” Roselle said. “We knew that if we were going to have a research grant, we wanted it to be somewhere where it could make a difference, where we would be proud of it.”

When asked on his wishes for the ALS Walk, Roselle was adamant in his response.

“First off, I hope to help them better understand, to share some of our experiences and help them understand more about what ALS tragically does, both to patients as well as to families and to caregivers. Second, I hope to send a message that — as insidious a disease as it is — there is still hope out there. We’ve seen a lot of medical advances over the years, but the emerging research taking place gives me faith that the youth of today will be among the leaders that find an answer to this. I'm hoping to see a lot of Notre Dame students out there this Sunday.”

Registration and donations for the event are currently available on the Neuroscience Club’s page on Student Shop ND, with an optional entry for a random drawing for an Apple watch to be held at check-in the day of the event. All participants will receive a free ALS T-shirt while supplies last.