In 2014, videos went viral of people performing the ALS ice bucket challenge in honor of raising awareness for an absolutely life changing disease. ALS or amyotrophic lateral scelrosis is a slow progressive disease that affects nerve cells in the brain and spine. Esentially, as the disease continues the muscles in the body start to deteriate due to a lack of muscle nurishment. There are two different kinds of ALS, sporadic and familial. Sporadic is the more common form in the United States. 90-95% of patients diagnosed with ALS are diagnosed under the sporadic form. Familial however, is slightly less common as it only can be contracted through genetic inheritance. For the past 75 years no research had been conducted until this summer when significant amounts of money were raised through the ice bucket challenge to support funds for testing. Subsequently, they have been able to find a drug that can slow the disease down, however inevitably the muscle function within the lungs will become suppressed and a victim of ALS will eventually decease. I had the pleasure of speaking with Niall Keane and Katie Farrell from Saint Michael’s College, who both have personal affiliations with ALS, and want to create awareness on Saint Michael’s Campus about getting involved in this cause worth fighting for. (For more information on ALS please feel free to click here: ALS Association website)
Her Campus: What is the event that you guys are attending and when is it?
Niall Keane: It is the Burlington Walk to Defeat ALS. It’s run by the ALS association, specifically the greater New England Chapter. They put on this event every year. It’s a one mile walk starting at UVM, on September 23 at 10:30am.
HC: How can people sign up for the event?
NK: You can go to our page link and join our team. You can either register as a fundraising walker, a virtual walker (someone who can’t actually attend, but is still interested in joining the fight), or an ALS hero (someone who has the disease and is proud to be walking). However, people can also donate to our page or to a specific walker on our team.
HC: What is your connection with ALS?
Katie Farrell: I have an Uncle who has had the disease for around 4 years. So I want to walk this year in honor of him as well as do more for the cause.
NK: My cousin, Patrick Quinn, was diagnosed with ALS when he was 29. He didn’t know what to do when he was diagnosed and really wasn’t comfortable accepting this disease as a death sentence. Therefore, he created his organization called “Quinn For The Win” in order to raise awareness for the disease. He truly is one of my inspirations because he fully believes that together we can overcome anything.
HC: What are you guys trying to achieve during this walk?
KF: Both of us really want to raise awareness around campus, in terms of advocating for the disease. We would rather have people walk with us, even if they can’t donate anything.
NK: To have our presence seen and known and to be the next generation of advocates for ALS, is giving hope that we can’t even internalize right now. When ALS patients see a group of college students supporting them, it gives them so much hope. And my goal is that in the future we’ll be able to end ALS.
HC: What’s the biggest challenge that you have had to face?
NK: For me, when my cousin was first diagnosed I was relatively young. I think I was a freshman in high school when he was going through testing. Testing is an extremely stressful and rigorous process because essentially they make a long list of all the possible diseases, with ALS being the last disease, and they run through each test until ALS is the only thing left on the list. So for me it was really tough to internalize that ALS is a death sentance and it’s extremely painful to have a doctor stand infront of you and try to explain that you only have 2-5 years left. It really leaves you in a place of unknown, because there isn’t anything that can be done. And I think since then having to watch my cousin slowly deteriorate has been really difficult. And I think now that I’ve been exposed to it, I really understand why it’s so important that we fight against this disease.
KF: I was also really young when I found out. And I had never heard of ALS before. So the first challenge was understanding what it was and what it meant. At first I was really shy and scared to ask questions about it just because I didn’t know what it was. But now I only get to see my Uncle a few times a year, so everytime I see him it’s different since he’s progressed further. So I think knowing what to expect and how to act around him is also really difficult for me, because sometimes you forget that if you hug him he can’t hug you back. So I think that’s been the hardest thing, even though no matter how low his mobility seems to get, his spirits always seem to be growing bigger.
HC: Why is it important for people like us to advocate for ALS?
NK: I think as the Saint Mike’s community we focus a lot on our community aspect. And one thing about community is we don’t let one person fall below and get left behind. Essentially, we’re a community that lifts each other up while encouraging success. For me or Katie or anyone else who knows someone with ALS, to have ordinary people show up and show support means so much to the families and victims of ALS. More than you could imagine. Things like the ALS ice bucket challenge have created a hope that is inexplicable. It motivates me to keep on fighting no matter what.
KF: I think it’s important for us as a younger generation to stand up for it, because even though it’s been around for so long, it’s really just recently becoming apparent and people are starting to take more interest in learning about it. I really see us as being a kick off for this movement and I think we’re the ones who need to keep it going.
For more information about ALS please refer to the ALS Association website.