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Neuroscience club to host First Annual Notre Dame ALS Walk

| Friday, October 30, 2015

Little more than a year after videos of people soaking themselves with ice water flooded Facebook feeds for the “ALS ice-bucket challenge,” the Neuroscience Club will hold the first annual Notre Dame ALS Walk on Saturday, in conjunction with the College of Science.

All proceeds from the walk will support ALS programs and research, social service chair of the Neuroscience Club junior Chris Ferari said.

ALS_Graphic_WebJanice Chung | The Observer

Ferari, who helped promote and organize the event, said the goal of the walk is to raise awareness for the disease on campus and “make people aware that we want this to be something we’re going to do every year.”

“[We want] to get it on everyone’s radar and say, ‘This is something that we want to continue to do. ALS isn’t going away, so we want to continue to raise awareness past just this year,’” he said.

Amyotrophic lateral sclerosis (ALS), also referred to as Lou Gehrig’s disease after the New York Yankees baseball player diagnosed with the disease in 1939, is a “progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord,” according to the ALS Association’s website.

The website says patients living with ALS have an average life expectancy of about two to five years following diagnosis.

Sean Kassen, the director for academic advancement in the College of Science, said the rarity and severity of ALS make walks like the upcoming one at Notre Dame important in raising awareness and generating interest in research for the disease, which is sometimes overlooked in favor of more prevalent diseases.

“ALS is a tough disease to get. It is a scary disease. It is a devastating disease; there is no cure,” Kassen said. “And still there’s not a lot of research that is out there on the direct causes, and hence the potential way to cure it.

“ … ALS is a [disease] that largely I would still say people don’t understand, and by doing a walk like this it brings it front and center. It brings more awareness first and foremost.”

Besides raising awareness, Ferari said he hopes the walk will encourage ALS research at Notre Dame, where there are currently few people actively involved in ALS or ALS-related research.

Among the few at Notre Dame whose research is relevant to ALS is biochemistry Ph.D. candidate Tiffany Snow. Snow currently studies the NMDA receptor in the brain, which she said has been associated with Huntington’s disease, Alzheimer’s disease, alcohol dependence, strokes and ALS.

“The receptor I’m working on, very little is known about how it’s behaving and why it behaves in certain ways, and especially – what’s more interesting – how and why it behaves under neurological stress or some sort of disorder,” Snow said.

“This receptor – because it’s in a lot of neurons in the brain and a lot of important areas of the brain – when something goes wrong in it, it’s seen in a lot of different disorders,” she said.

To support her research, Snow received an ALS Ice Bucket Challenge fellowship for the 2014-2015 academic year.

“I think while it might seem inconsequential to look at a certain receptor – just one receptor or maybe one part of that receptor – it’s looking at the little things like that that will answer bigger questions that will affect thousands and tens of thousands of people, potentially, in a lifetime,” Snow said.

Although this weekend’s walk is the first of its kind to occur on campus, it is not the first ALS walk to have a Notre Dame connection.

Les McCarthy, a Notre Dame parent and member of the Notre Dame Club of Mid-Hudson Valley, helped organize a walk through the Mid-Hudson Valley club in 2009 following the loss of one of its members, Notre Dame Ph.D. class of 1970 alumnus Gus Raspitha, to the disease.

“When we lost him in the spring of 2009, we decided we really should do something to raise awareness,” McCarthy said. “So our club held this first walk Nov. 15 of ’09, of which there were 55 of us walking.”

The Hudson Valley Walk to Defeat ALS has taken place every fall since its inception in 2009, and during that time it has grown from 55 individual walkers raising nearly $5,000 in 2009 to 147 walk teams raising more than $346,000 in 2014. In total, the walk has raised more than $1 million to benefit support services, awareness and research for ALS.

Since they began the Hudson Valley ALS walk, members of the Notre Dame Club of Mid-Hudson Valley have been in contact with various people at Notre Dame about the prospect of holding an on-campus walk, Kassen said.

“They’ve been very big supporters of our efforts here with rare disease research, and [McCarthy] has always suggested that we try to do an ALS walk,” Kassen said. “And so once this new [neuroscience] club came up we talked together … I knew this is something he was very passionate about, and so we came to the conclusion that we potentially could do this [event]. And that’s when I presented the idea to the Neuroscience Club.”

From there, the Neuroscience Club undertook organizing the walk, which Ferari said he hopes will become the club’s “signature event.”

This weekend’s walk will span a distance of 2.7 miles, with a stop at the Grotto for a short prayer. Registration is $10 per person, and snacks and coffee will be available to participants before the walk.

Ferari said participants are also encouraged to wear costumes in the spirit of Halloween.

So far, Kassen said, the event has generated significant interest.

“Every time you do an event for the first time, a lot of it is you’re trying to get people to show up, you’re going to learn sort of on the fly, you have to do all your due diligence ahead of time, you have to make sure all the paperwork is done appropriately and that the correct people at the University know about it,” Kassen said. “ … To me, [the walk] has already been a win. People are already signing up and they want to attend.”

Looking toward the future, McCarthy said he hopes the walk will have a real impact in stimulating advances in the field of ALS research.

“Where will this take us on campus?” he asked. “Only time will tell, but if history teaches us anything, it could be the start of something big. It’s my desire that the luck and the skill of the Irish just might be what can make a significant contribution to solving this mystery.”

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