“MS changed our families. Now we’re going to end MS”

Nearly 100,000 Canadians live with MS, but it also affects the children of those who live with the disease. A generation of young people are determined to change this, including Lucas Nystrom, who lost his stepfather last October due to complications related to primary-progressive MS; Nicholas Addesso, whose mother has lived with MS his entire life; and Matthew Lee, whose mother was diagnosed with neuromyelitis optica (NMO) when he was just two years old.

Named the 2016 winners of the Follow the Leader Scholarship (made available due to the generous support of the KRG Children’s Charitable Foundation), these three are following in the footsteps of Allie Sherwin – determined to play a role in ending MS.

First, congratulations! How do you feel about receiving this kind of support for your education?  

Lucas Nystrom: It’s important to engage youth who want to make a difference – especially those of us from families already facing the financial struggle of dealing with a debilitating disease. Because of this I’m able to go into the integrated science program and major in chemistry and biology at Dalhousie University.

Nicholas Addesso: The mission is to eradicate MS right? What better way to than to provide tools to the people who have been exposed to it the most? We know what it’s like. We’re the most motivated to see an end to MS.

Matthew Lee: It’s not every day you meet someone else who has a parent living with MS. But it’s rewarding to see the ambition you both have. It gives me hope that we’ll be able to have an influence on MS in the future.

What would this scholarship money allow you to do that wouldn’t otherwise be possible?

ML: I have less stress about going to university, and there isn’t such a financial burden over my family. Now I’ll be going to University of Toronto for life sciences, and I’m not sure that would have been possible without this.

LN: Since I was 14, I’ve been working as much as I can. And after five years, I had enough money to pay for a single year of tuition. I thought, getting an education shouldn’t be this discouraging. Now I can maybe apply for an internship over the summer or find a way to give back in my free time rather than working non-stop to pay off university.

NA: Yeah, I was planning on getting an entry-level job right after school to pay off my student loans before jumping into my career, but now maybe I can get a master’s degree or become a doctor.

ML: I just look forward to paying back through the research that I’ll be able to do now because of this opportunity.

When you look ahead 10 years, where do you see yourselves?

NA: I remember when my mom was having MS attack after MS attack. She lost half the vision in her right eye. She got to a point where she couldn’t use her legs very well. But we were extremely lucky because she was approached to take part in a clinical trial and the results really helped her.

I’m going to study biochemistry and chemical engineering at the University of Ottawa. And so I see myself contributing to research that helps other people like my mom.

 

LN: I absolutely want to be a part of that, too. For me that’s going into clinical research and finding results. I know the difference that can make and what it will mean for the person growing up with MS in their life.

ML: And for me, I just want to find reasons why diseases like MS exist. I want other kids growing up to know what this disease is, why it happens and how they can help.

LN: Well, it’s not like it’s a new disease. It’s been around for so long, but still a lot of people don’t really know the problems it can cause and the difficulties it can cause in families.

NA: Living in a small town, I haven’t had that many outlets to express what it’s like to be so close to it. I remember doing the MS Read-A-Thon, but that doesn’t quite prepare people for what it’s going to be like, or when and who it’s going to hit.

LN: I live in this tiny little town, too, but my mom and I do a quick two-hour drive to Winnipeg and you see thousands at an event. It changes your perspective. You start to feel how important this is to so many people.

ML: And for me, even though I’m in a bigger city like Toronto, when I read posts online it just reaffirms that I’m not alone. There are so many other people out there just like us.

LN: I’ll start up conversations with my biology teacher, my chemistry teacher, or with other students in the classroom. So you bring attention to it as much as you can, little by little. But looking to the future, I’d really like to get to a point where we’re raising awareness on a larger scale.

How did you feel when you found out you were a recipient of the scholarship?

ML: It seemed out of the blue – when I heard the news, I was so ecstatic I could barely put together the words to finish the call.

NA: I couldn’t stop giggling. Oh man, it was amazing. Honestly it really lifted a burden off the whole family. I couldn’t believe it.

LN: My mom always tried to keep me grounded. “It would be an incredible opportunity, but don’t get your hopes up,” she said. When I got the call I tried to keep a straight face for as long as I could, trying to not give away my excitement to my mom and my girlfriend who were leaning over me trying to hear the results.

To me this was the MS community saying, “We see how much work you are willing to put in and we want to make sure you have the support you need to be successful.” And it feels so great to be encouraged with what I’m – what we’re – going to be doing next.

What are you most excited for heading into the fall going to school? Have you said your goodbyes?

NA: I’m going to be home every weekend, so it’s not goodbye forever. But I’m excited because I’ve never had a roommate before.

LN: Distance is a bit of an issue for me, but I’m definitely going to be calling my mom as often as I can. I’ve been in a small town my whole life, so this means more access to what’s out there – I feel like this will make life more meaningful.

ML: There will be around 6,000 people just in my program alone. That’s a lot of new stories, new faces and a new environment. It’s kind of exciting and kind of scary, but I’m ready to approach the challenge and give it my all.

What would a cure mean for you?

LN: I lost my dad last October, and that was definitely hard. If a cure was found it would mean the world that no one else has to go through what we went through.

ML: My mom lost vision in both her eyes and is completely paralyzed from the waist down. Having a cure would mean she could see 20/20 and we could go for walks again.

NA: A cure would mean less suffering in the world, and could you really ask for anything more than that?

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The 2016 Follow the Leader Scholarship awarded three exceptional Ontario-based youth with the financial support they need to overcome the financial obstacles that come with a personal or familial diagnosis of multiple sclerosis, enabling them to attain the education they need to reach their full potential and become the next generation of MS leaders. Find more information about this and other scholarship programs for youth affected by MS.