The ALS Society of New Brunswick and Nova Scotia stands as the sole advocate for ALS patients and their families across both provinces, providing critical support through an Equipment Loan Program that delivers roughly $100,000 worth of essential gear—breathing machines, wheelchairs, lifts—to each client at no cost. Under the leadership of CEO Kimberly Carter, who has guided the organization for over 15 years into becoming one of Canada’s leading ALS societies, the nonprofit has expanded beyond its annual Walk Strong fundraisers to include the Circle of Care Conference each August, bringing together patients, families, and healthcare professionals to share advancements and experiences. We spoke with Trey Russell-Johnson, Marketing and Event Manager, to find out more.
Describe your charity/non-profit/volunteer work in a few sentences.
The ALS Society of New Brunswick and Nova Scotia is the only non-profit advocate for ALS clients and their families in the two provinces. We help support our ALS clients in all aspects of their daily lives, including equipment, all at no cost to them.
What problem does it aim to solve?
While ALS does not have a cure, we aim to help our clients live as independently as possible in the face of an ALS diagnosis. ALS progressively deteriorates voluntary muscles by destroying the motor neurons that control them, so our Equipment Loan Program helps our clients maintain their independence as the disease progresses with equipment such as breathing machines, suction machines, wheelchairs (both manual and electric), lifts, and more.
This is also all done at no expense to our clients. On average, a person living with ALS will need five pieces of equipment in their life, and these pieces of equipment cost about $100,000, which would not be covered on typical insurance.
When did you start/join it?
I joined the ALS Society of NB&NS in my position just over two years ago, in October of 2023!
What made you want to get involved?
One of my hockey coaches and family friends growing up was diagnosed with ALS when I was young, so I was able to see how the disease affects a family first-hand. Years later, after pursuing a career in Marketing, I saw this position available, recognized the impact that a society like this has on people’s lives, and wanted to be part of it.
What was the situation like when you started?
The ALS Society of NB&NS was in a good position when I first started. Our CEO, Kimberly Carter, has been with the organization for over 15 years and has helped make it one of the leading ALS Organizations in all of Canada.
How has it changed since?
Our society continues to grow as time goes on, as well as our awareness, as we have made a serious effort in this front. On top of our annual Walk Strong fundraiser, which has been going on for years, we now also host a yearly Circle of Care Conference in August, which allows ALS clients and families, as well as Healthcare Professionals, to come to a weekend conference and learn about new technologies, advancements in research, hear directly from our clients, and more.
What more needs to be done?
While it is great to see awareness for our society and for the disease improve, there is still a lot that can be done on this front. While most people remember the Ice Bucket Challenge from 2014, few know much about ALS, so increasing public awareness of the disease would greatly help people understand our cause and our clients.
How can our readers help?
There are lots of ways for people to help our cause! You can follow us online on Facebook, Instagram, and LinkedIn at @alsnbns to learn about updates in our community, advancements in research, upcoming events, and more. Sharing these with your community will continue to help us grow.
As well, if you want to support us directly, visit our website at alsnbns.ca and click the donate button! All money donated to our society goes directly to helping our clients.
Do you have any events coming up?
We have our annual ALS Walk Strong fundraisers taking place in ALS Awareness Month, June of this year, so keep an eye out for walk dates and times as they are revealed! We have about 12 planned walks a year throughout the month, so stay tuned on our socials for one that may be in your area.
We also have our annual Circle of Care Conference in August this year, and more details will be released!
Where can we follow you?
Facebook | Instagram | LinkedIn
PAY IT FORWARD: What is an awesome local charity that you love?
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