Changing the concept of hope for families touched by ALS

In August 2018, Isabelle Lessard and her daughter, Maria, then 14, participated in the Ride to Fight ALS for the first time, a deeply moving experience. Their husband and father, Vincent, was diagnosed with ALS in 2015. Since then, Isabelle has been actively supporting the cause, by co-founding the Vincent Bourque Foundation and through her role as an Ambassador for ALS Quebec.

My husband was diagnosed with ALS in May 2015. Up until then, the illness had been a very private thing for our family. I decided to do the Ride to Fight ALS cycling challenge so that my daughters—our daughters—could experience the full support of the community, and make a difference as well. At the time, Maria was 14, Charline was 10, and Arielle was 9.

It was a huge challenge for Maria and I. We didn’t even own bikes! But we decided to make this a family challenge—for a cause that was important to all of us. We wanted to be able to make a difference together. As luck would have it, my brother-in-law was in the process of opening his bike shop called Joe Bicycles: We found our experts! Everything was falling into place for us to sign up for the Ride to Fight ALS. Slowly, but surely, with Joe Bicycles and the entire community behind us, we completed the challenge, pushing through each kilometre with a smile on our faces.

I’ll never forget the sheer joy and the feeling of hope and accomplishment that we shared with my husband, our daughters and our friends at the finish line.

Our goal in tackling this physical challenge was to raise awareness for the cause, to make a difference for my husband and for everyone else affected by ALS. It was also the perfect opportunity to have an exciting adventure with my daughter, in honour of Vincent, because love can conquer all, even ALS.

We had so many people rooting for us, from the bus driver to our hairdresser to teachers and neighbours. The support we got from our family and friends was truly heart-warming. During the event, we also had the unforgettable opportunity to meet other people with ALS and their loved ones. The Ride to Fight ALS is much more than just a physical challenge; it’s an event steeped in compassion, support and hope. It’s truly an amazing, magical  weekend.

Vincent Bourque, surrounded by his spouse Isabelle and their three daughters Arielle, Maria and Charline.

Reigniting the spark of hope
In the very early stages of his disease, my husband said it felt like all the energy in his legs had drained away—like the spark had gone out. That was the first sign of ALS; he had been an amazing athlete. Our goal in doing the challenge was to restore hope to the people touched by ALS. At the closing barbecue, Maria took to the stage to say a few words and then we all lit sparklers to “spark new hope for her father” and for everyone suffering from the disease. That was a very emotional moment.

The Ride to Fight ALS was truly remarkable and inspiring to us in so many ways. Our team smashed its fundraising goal by raising $13,000. The impact of this event is immeasurable. We will cherish the memory of each kilometre we travelled, because with each push of the pedals, we knew how deeply we were loved and supported. And this gave us the boost we needed, during the Ride itself, but also while training for the event and still today.

We were carried forward by a tremendous wave of love, positivity and hope. We met so many dedicated professionals, generous volunteers, and other families like ours. This event brings everyone in the ALS community together and gives them hope and the opportunity to strike a blow at ALS.

Taking part in the Ride to Fight ALS has a direct, concrete impact on the ALS community. So, we’ll be back next year—and probably for many years to come—from August 23 to 25 in the Mauricie region with an even bigger team!

About the Vincent Bourque Foundation
On November 15, 2018, ALS patient Vincent Bourque and his wife, Isabelle Lessard, launched the Vincent Bourque Foundation with the goal of eradicating ALS by funding research and supporting families touched by the disease at ALS Quebec.

The Vincent Bourque Foundation partnered with ALS Canada and the Brain Canada Foundation to award a $165,000 Post-Doctoral Fellowship to Dr. Sahara Khademullah, a postdoctoral candidate from Dr. Yves De Koninck’s lab at Université Laval. The Foundation has also pledged to sponsor the annual André-Delambre research symposium for the next ten years. This symposium attracts internationally renowned ALS researchers, who share their knowledge and latest discoveries about the disease.

The boundaries of research are limited only by the amount of funding available. That’s why we’re proud to contribute to the discovery of new treatments through ALS research by helping researchers who are just starting out in their careers –  explained Vincent Bourque, co-founder of the Foundation, a few days before he passed away on November 20, 2018.

Until a cure is found, the Vincent Bourque Foundation, through the ALS Society of Quebec, will work diligently to improve access to the best care and assistive devices for people with ALS and their families in order to help them maintain their autonomy and quality of life for as long as possible.

The Vincent Bourque Foundation will continue its work in honour of this formidable man, who leaves behind an inestimable legacy for the ALS community.

 

Like Isabelle and her daughters, come out to the Ride to Fight ALS to spend quality time and build exceptional memories with a united community. From August 23 to 25, 2019, come out to Auberge Godefroy to explore Mauricie’s impressive landscapes.  To learn more and register, please click here.

>> To read the rest of our 2018 Annual Report, please click here.

Anne Edimo