As the Project Manager of the Alberta ALS Research Network (AARN) – an initiative that brings together the ALS Society of Alberta and the brightest ALS minds in the province to effectively and efficiently fund homegrown-research – one of my top priorities is bridging the gap between the ALS community and the clinicians and researchers working to end this disease.
I took this job because it is close to my heart. My husband, Chris, lived with familial ALS from June 2019 until September 2023.
Chris was given months to live when he was diagnosed at 37 years old. Instead, he got years – precious, memory-filled years with me and our two children.
We owe those years to research.
A month after his diagnosis, Chris began a clinical trial for a medication then called tofersen and now known as Qalsody, which targets the specific genetic mutation (Sod1) that caused Chris’ ALS and has since been approved by Health Canada.
Throughout Chris’ illness, I was his primary caregiver.
I navigated the health care system. I researched every new problem that presented itself and tried to find “hacks” to make those problems manageable. I applied for Self-Managed Care through AHS, hired and trained a caregiver. I parented two young children all while my husband became completely dependent on my help for every task of every day. I read all the research and asked all the questions and printed out all the medical journal articles to talk about with our doctors.
I have lived this ALS journey from the front lines.
When Chris died, I began a new journey – a life on the other side of this disease. In one big way, though, my life has not changed. I remain deeply committed to doing whatever I can to help end this disease and making sure the ALS community has the information they want and need when it comes to research.
So, what is AARN?
AARN is powered by the ALS Society of Alberta with a goal of making Alberta a global leader in Amyotrophic Lateral Sclerosis (ALS) research and care. AARN’s mission is to accelerate research and find a cure for ALS by fostering collaboration between top ALS researchers at Alberta Universities.
What does that mean for Albertans impacted by ALS?
On a community level, AARN aims to make research accessible and easily understandable. This looks like sharing in clear and direct language where research funds are spent, keeping the community updated on the latest projects that have received AARN funding, what research and trials are happening in Alberta and what is happening in the broader ALS research landscape.
As part of the ALS Society of Alberta, AARN takes seriously the Society’s mission to make every day the best possible day for Albertans living with and impacted by ALS. At AARN, we know that ALS families are interested in engaging with and participating in research.
Navigating ALS is overwhelming. Navigating ALS research should not be.
Most of us have no background or institutional knowledge when we are thrown into life with ALS. Most ALS families do not have enough time, energy or bandwidth to sift through all the information out there on our own. I know there are so many new words and concepts to navigate because I have been there, trying to find answers to those questions myself.
Questions like:
What is NfL (something about football?!) and why does it matter?
What does “statistically significant” even mean?
You read that a trial ended and did not meet its “primary endpoints.” Huh?
A pharmaceutical company announces a trial phase was successful but does not release any data. What gives?
Why does every press release about Phase 2 trial results make it sound like the drug is miraculous when almost all ALS drugs have failed in Phase 3 trials?
The ALS world is excited about news of a blood test that can detect ALS up to 10 years before symptom onset. Why does that matter?
There is a trial being offered in Edmonton but not Calgary. Why?
A doctor at clinic wonders if you would be willing to collect a stool sample for research. What could that possibly have to do with ALS?
Why should you be hopeful about the state of ALS research right now?
We need answers and treatments now. Why is research so crushingly slow?
The list of questions is endless.
Let’s get them answered in language you do not have to be a neurologist to understand.
As AARN project manager, I am responsible for helping get the money the Society raises for research into the hands of Alberta’s best and brightest minds doing ALS research.
I also feel that, as part of the ALS Society of Alberta, I have a great responsibility to you – Albertans impacted by this disease.
You are AARN’s most important and integral stakeholders.
You are the reason we do this work, and we want you to be part of it.
How can you get involved?
There are several ways to get involved with AARN:
Join AARNhere or ask your Client Services Coordinator (CSC) to help you register. As a member, you’ll receive periodic updates and invitations to research webinars and events.
Reach out to me at kelsie@alsab.ca to ask questions, let me know you’d like to get involved, or express your interest in becoming an AARN Community Ambassador.
Follow AARN on social media to stay informed and ask your research questions. Find us on Instagram and Facebook at @alsab_aarn.
My husband often used to say that ALS is a disease of inaction, a frustrating reality in a community full of people who are so eager to act.
In our family, research was the action. It gave us agency, purpose and, most of all, it gave us hope.
I look forward to connecting.
In solidarity,
Kelsie Snow AARN Project Manager Alberta ALS Research Network
