Making a difference in MS research

This summer was a memorable one for MS research. In June, we saw the results of the Canadian Bone Marrow Transplantation trial, which allowed Jennifer Molson go from a mobility device to dancing at her wedding. Dr. Ruth Ann Marrie was appointed to the newly established research chair at the University of Manitoba with a special focus on MS.  And researchers at UBC pinned down a molecule that permits the entry of harmful immune cells into the spinal cord in MS-like disease, bringing us closer to understanding the underlying mechanism of episodic illnesses.

Funding the next generation of MS researchers is how we will find the breakthroughs of tomorrow, and that’s what the John Helou Scholarship (made possible through the generous support of Pfizer Canada Inc. and Innovative Medicines Canada) is all about. Thanks to this scholarship, two bright young women will be supported as they pursue education that will allow them to contribute to MS research. From Red Deer, Alberta, Jeannelle Bouvette was diagnosed with relapsing-remitting MS less than a year ago, and from Georgetown, Ontario, Lauren Smith is a young woman whose mother was diagnosed before she was born.

Jeannelle, you’ll be starting classes this week in the immunology and infection program at the University of Alberta, and Lauren, you’ll be at Nipissing University studying nursing. Why is it important that this sort of support exist?

Jeannelle Bouvette: Trying to have a job while I complete my first year would be incredibly stressful. And as someone who has MS, stress causes me to relapse. This grant means I can go to school and not worry. I also feel that because I’ve been given the opportunity to work in this field that has real relevance to my life, I’m even more motivated to give back.

Jeanelle Bouvette

Lauren Smith: For me it means that there are people out there who want to see me succeed. This scholarship also gives people whose families are affected by MS a platform to share our stories.

What was your reaction when you got the call that you had won the John Helou Scholarship?

JB: Oh my god, I was so happy. I was so surprised.

LS: Well, I wasn’t expecting to get it at all. I made a scene in a public hallway.

I’ve been working a part-time job since I was in grade 10 and was saving for university, but it’s so expensive. Even combined with my parents’ savings, there was just no way it was going to be enough. This scholarship has given me a future. And it gives us a way to make connections and make a difference.

Lauren Smith

JB:  I didn’t fully realize until a few weeks ago, when I got my student loan back and there wasn’t enough money for me to pay for my entire tuition, that I really, really did need this. My dorm room is more expensive than it would have been if I didn’t have MS because I need an accessible bathroom for when I experience vertigo. I can’t be using the public one, kicking everyone out because I’m busy throwing up.

What role did MS play in shaping your experiences growing up?

LS: My mom was diagnosed before I was even born. When I was younger I didn’t really understand it. There’s this stage you go through when you’re like “Mom, why can’t we stay longer at this hockey game?” It’s hard as a child to understand those limitations, but as you get older you realize that it just means sometimes you have to adjust how you do things, and that’s okay.

My younger sister and I take on the cooking, cleaning, shopping. So yeah, I’m a bit concerned about leaving home next week and living farther away. But I’m also putting my career in a direction that is focused on fighting back against MS.

Lauren Smith and her family

JB: I don’t know if I could handle someone in my immediate family having MS. When I struggle, I feel like I can come through it, but if it was happening to someone I love, I would feel so helpless about it.

LS: It’s definitely not easy knowing that I can’t stop it. When I was talking to her about this, she said she was glad the scholarship went to you because she can imagine herself being diagnosed in university and how challenging that must be.

JB: It is hard. I had four relapses before I was diagnosed. But once I was able to identify what was happening, it almost felt easier than before because I knew what was causing it.

In high school, I was balancing a full course load with a lot of difficult classes, volunteering as a tutor, working a part-time job, starting petitions. But about six months after my diagnosis, I realized I couldn’t keep up anymore. I was relapsing almost monthly despite the medication.

Some of the nurses suggested lightening my course load, but I stepped back in other ways because I didn’t want to limit myself academically. My neurologist switched my medication, and that really helped. I’m so grateful I had a doctor who offered options, and nurses that allowed me to make my own decisions.

Jeannelle Bouvette

A good support system is so important. In Canada we have the highest rate of MS in the world. What else should young people know about the disease?

JB: Two weeks ago, I was talking to my friend and I mentioned that I have MS, and her response was, “Is that, like, back problems?” So I think it’s important people know more. I educate my friends, but it will be nice to do it on a bigger scale.

LS: I’ve had people ask me point blank, “What’s wrong with your mom?” And even when I try to explain, sometimes it feels like people just don’t understand. So yeah, like you said, letting people know we have the highest rate and that we need to find a way to change that. Social media, for me, is a big one – it’s the way our generation gets information.

JB: When I was young I remember the MS awareness ads always being kind of scary and I thought, what an awful disease. But since I was diagnosed, I’ve met so many people that are affected by it and still do so many things. A diagnosis of MS doesn’t mean your life is over.

LS: And people with MS are no different than anyone else. They are totally capable people who have great ideas and can do so many wonderful things.

Lauren Smith on vacation with mom

It wasn’t just the grades that got you on the short list for this grant; you’re both quite active in your communities.

JB: I started volunteering with the Native Friendship Centre this past year and I love it. I’m native but I haven’t really had the opportunity to be involved in that culture, so not only am I helping them but they are helping me – like I learned how to make bannock and now I do it all the time.

I also volunteer at my school library. And there is this charity scavenger hunt which includes going into the community and helping out. It makes you go outside your comfort zone and do things to help others.

LS: I started with the Mayor’s Youth Action Committee of Halton Hills in grade eight, and I’ve been on it all through high school. Communities may be run by adults, but it’s important that youth also have a voice.

I also volunteer at the local hospital, which is something that helped me to figure out where want to work in the future.

What would a cure for MS mean to you?

JB: I could stop worrying about when my next relapse will be. Every time I have a new symptom, I think oh my god, how bad is this one going to be? So it would mean I don’t have to worry about how everything is going to impact my MS, and I could just live my life the way I want.

LS: You never want to see the people you love be limited by a disease. Having a cure would mean that my mom could do everything she wants again.

But Jeannelle, I think you are really going to succeed wherever you go. I know you’re going to be a role model for all of the youth with MS.

JB: I hope so!

Named for John Helou, immediate past chair, Innovative Medicines Canada and president, Pfizer Canada Inc., the scholarship awards exceptional youth who plan to complete a post-secondary degree in the areas of science, technology, engineering or math (STEM) – academic streams that directly influence ongoing work to end MS. Find more information about this and other scholarship programs for youth affected by MS.

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