Living in Thunder Bay, Ontario can come with the everyday beauty of lakes and stunning natural landscapes – but, for individuals and their families navigating ALS in the communities of northern Ontario, the distance from larger Canadian cities creates unique challenges. 
When Miriah Botsford’s father was diagnosed with ALS at the age of 66, she was already deep into research options – suspecting his symptoms pointed to ALS after the family had previously lost her grandfather to the disease 12 years earlier in 2010. “We were able to hit the ground running a little more when my dad was diagnosed, just because we’d been through it and I was more familiar with ALS since going through nursing school.”
Miriah is a nurse practitioner in Thunder Bay, but outside of work she dedicates time to supporting the advancement of accessible treatments and research for ALS through her advocacy efforts. When navigating her father’s ALS diagnosis, she experienced firsthand the challenges of wanting to be a part of clinical trials but being faced with accessibility roadblocks. “I was lucky to get connected with ALS Canada, but I definitely felt the weight of getting this diagnosis, living in a rural community, and trying to navigate care with no specialized clinic close by – that was a battle.” The closest clinical trial was located in Minneapolis, but unavailable to individuals outside the United States. After comparing many options, they landed on participating in a trial in Ottawa – where Miriah’s brother lived, and the family could undertake the long drive.
Miriah’s father passed away in 2022 – within a year of being diagnosed. Since his passing, she has graduated from the ALS Canada Canadian ALS Learning Institute (CALI) and is an active member of the ALS Canada Community Ambassador program and the Participant Partner Advisory Council (PPAC) with CAPTUREALS. Her experience navigating the impact of an ALS diagnosis and access to research for residents of northern Ontario brought up questions, “What if people in this area want to participate in clinical trials but can’t travel or don’t have the means?” It was concerns such as these that prompted her to step into advocacy. “You go through ALS and experience the challenges individuals in rural communities are navigating – and I had the benefit of being medically literate – when they have this massive emotional, financial, physical burden while trying to get a certain level of care, access, and clinical trials. I was trying to figure out how I could make that a little bit easier for people in this area.”
Her compassion for other individuals navigating similar situations strengthens her efforts toward change, but Miriah’s advocacy finds its roots in a hope to generate a better understanding of the disease – for the broader ALS community and, more specifically, her family. “Right now, there is still a question mark for my family. When two people are diagnosed, you jump to the fact that there is probably some genetic risk, but we don’t know what it is. The more you can help in advancing research, the more you can help with identifying new genes – like we’ve seen in SOD1 and Qalsody – with ideally targeted therapies.”
Originally, her advocacy efforts began in the nursing world – reaching out and engaging local physicians and stakeholders – but more recently, Miriah has connected with local elected officials to set up meetings aiming to garner awareness and support. Advocacy efforts to engage elected officials can be daunting and overwhelming, which is why ALS Canada aims to support efforts, like Miriah’s, with resources and tools. “What helped with feeling comfortable was the pre-drafted document to send to local officials ALS Canada provided. It’s well-received, looks nice, is concise, and helps as a starting point to open up that conversation.”
For people thinking of starting their advocacy efforts, Miriah emphasizes the importance of not getting caught up in the “right way”, “The more you have conversations, then one thing leads to another. It’s important to stay persistent and any effort – even small – can end up leading to somewhere bigger. The benefits of doing it outweigh the risks of not doing it or what might feel scary.” While ALS Canada continues to engage with officials in the federal and Ontario governments to advocate for policy changes it remains critical that the voices and experiences of people living with ALS and their loved ones are heard. “ALS is heavy in so many ways – it comes on and feels like there is no slowing down. The vast impact of the disease, the voices of families and people living with ALS, their opinions matter when driving change. It is not a stable disease, with a very significant impact, and it is important to showcase the significance of this diagnosis to the people who can make change.”
Losing a loved one to ALS is devastating, but in the wake of loss can come a push to honour their legacy and fuel change for other Canadians. “I think one of the big takeaways of why I’m so involved in ALS advocacy is because my grandpa and my dad’s main priority was always protecting and taking care of family,” says Miriah. “By getting involved in initiatives with the goal of ending or effectively treating ALS, ultimately, I feel I’m helping to pursue something that would be of great importance to them and align with their values.”
“When you go through an ALS diagnosis, how you look at life just changes. The things you overthought before you stop overthinking.” It’s due to the advocacy efforts of community members like Miriah, that ensure that people with lived experience are heard, stressing the urgent need for change, and helping to move critical advancements in the Canadian ALS landscape forward. If you are interested in taking the first step into advocacy, download our advocacy kit and stay updated on our latest efforts.