Category: From the Community

“I’ve seen what this community can do when we rally together and I believe we’re just getting started,” Mike Ambrose Jr. says as he looks forward to the second year of his community fundraiser, the Mike Ambrose Sr. Golf Tournament. Mike Jr. was inspired by the strength of his father, Mike Sr., who lives with ALS. Spending time in the outdoors has always brought their family together in a place where they thrive, and the success of the 2024 Tournament has motivated him to organize the event a second time. “Last year showed us the power of community and the impact we can make when we come together.”

The fundraiser has been a way for Mike Jr. to support his father and the thousands of Canadians living with ALS. It highlights the importance of community for families when navigating an ALS diagnosis. When faced with a challenge, Mike Jr. was drawn to create this event by the thought of his dad “surrounded by people who love him, knowing he’s not fighting this alone.” It follows Mike Sr.’s legacy of supporting family to rally around a cause to help others. “My dad is the kind of man everyone wants in their corner. He’s the guy who lights up a room with his smile and makes everyone feel at ease with his sense of humour and generosity. He’s kind and fiercely loyal, a man who has always shown up for his family.” This fundraiser is another opportunity for the family to stand by him, as he has for them for so long, and in turn have friends and local businesses rally around the family.

When organizing a community fundraising event, there are many routes to take – from bake sales to community runs. For the Ambrose family, deciding to host a golf tournament was the clear choice. For Mike Jr., the golf course has been a second home for him – a place where he can find joy and relax. Seeing an opportunity to utilize a space that has brought him comfort to help other individuals affected by ALS, Mike Jr. created the event to not only financially support critical community services and ALS research, but also to unite the strength of the community.

As the family navigates the unpredictable nature of the disease, Sherry, Mike Sr.’s wife, has emerged as the backbone of the family, “She is the definition of strength and compassion.”   Right by Mike’s side, Sherry researches, asks questions, and looks for new ways to ensure her husband has the best care possible with support from ALS Canada. In 2024, the first year of the Mike Ambrose Sr. Golf Tournament, the family had set a fundraising goal of $5,000, which they surpassed quickly, raising more than $15,000. Back again, for 2025, they aim to hit their goal of $10,000, in the hope of supporting families impacted by ALS through vital ALS research and community services. The Ambrose family also strives to encourage conversation and bring awareness to the disease, “ALS can feel invisible until it’s in your life. We want to change that.”

“Just do it” is Mike Jr.’s message for anyone thinking about running a community fundraising event. “When you’re standing at your event, looking out at all the people who came together to support your loved one, you’ll know it was all worth it. That moment, for me, is something I’ll carry forever.” If you are interested in starting your own fundraiser, visit the ALS Canada Community Fundraising Events page to explore your options. 

June is ALS Awareness Month — a time to reflect, unite, and push forward with renewed purpose. For me, it’s a moment to look back on how far we’ve come in ALS research, and to look ahead with hope for what’s still possible 

I’ve been involved in ALS research for the past 14 years. When I started in this field, my research focused on the ALS-linked protein SOD1. At that time, we were trying to understand how its misfolding and aggregation contributed to the disease. Fast forward to 2025, Health Canada approved Qalsody (tofersen), the first therapy in Canada for people with ALS who carry a pathogenic SOD1 variant.  

To have started my career studying that very protein, and to now see a therapy targeting its underlying biology, is a powerful reminder of what long-term, sustained research can achieve. 

Today, I serve as the Director of Canadian Research at ALS Canada. I work alongside researchers, clinicians, people living with ALS, and their caregivers — my everyday inspirations. After eight years at ALS Canada, I’ve seen firsthand how carefully funding decisions are made and how donor support translates into meaningful change. 

That’s why I give. I donate to ALS Canada because I believe in our commitment to funding high-quality research and supporting people affected by ALS.  

For ALS Awareness Month, ALS Canada has set a goal to welcome 30 new monthly donors — one for each day of June. These donations are critical in helping us continue to fund breakthroughs in ALS research.   

And this month, your impact can go even further. The first 30 new monthly donations will be matched for three months* by generous supporters. That means double the impact— more research funded, and more families supported.  

As a thank-you, new monthly donors will receive a free “United in ALS” tote bag — a small token of appreciation for your big-hearted support. 

The ALS research landscape has changed dramatically. We’re seeing progress at a pace I couldn’t have imagined when I first entered the field. While there’s still a long road ahead, the foundation is stronger than ever, and each gift brings us closer to a world free of ALS. 

This month, let’s keep moving forward — together. 

*Up to a maximum of $1,800. 

From personal loss to purpose: How my father’s ALS diagnosis shaped my journey

Hi everyone, my name is Charlotte Manser — though most people call me Charlie. And if you’re part of the ALS community, then I consider you a friend. My connection to this community began when I was 16, the same year my dad was diagnosed with ALS. He passed away a year later, in 2013. Now, in 2025, I’m on the verge of completing my PhD in Cellular and Molecular Medicine, focusing on cholinergic signaling, a specific type of brain signal that uses chemicals called acetylcholine and nicotine, in ALS. These chemicals bind to receptors in the cell called nicotinic receptors, triggering a process that can send a message along between cells. It’s a huge milestone — one I never saw coming. Looking back, two major events set me on this path: my dad’s ALS diagnosis and my own diagnosis of ADHD. Strangely, they happened around the same time, and both reshaped my life in ways I’m still unpacking. 

My dad was a proud member of the Canadian Armed Forces. He was strong, steadfast, and to me, larger than life. I was a daddy’s girl — no question — and for much of my childhood, we were thick as thieves. But his career often took him away from home. He volunteered for deployments to avoid frequent postings, spending long stretches — six to eight months at a time — overseas. These separations, though filled with deep moments of connection when he was home, slowly chipped away at our relationship. Each deployment seemed to take a little more from him. By the time I hit my teen years, something had shifted. He became more rigid, quick to anger, and increasingly distant. We clashed more than we connected. I didn’t understand it then, but I now realize those changes were likely early signs of ALS (with maybe a dash of post-traumatic stress disorder). 

Despite my connection to him and later, to ALS, science wasn’t my first passion. In fact, I struggled with it. I wasn’t the kid dreaming of lab coats or space travel. I found math, science — even basic memorization — nearly impossible. I could sit quietly in class, but when it came to applying what I’d learned, it felt like my brain hit a wall. My grades were average despite all the extra work I put in. It wasn’t until my final year of high school that things clicked — ironically, during one of the most emotionally chaotic times of my life. My dad had been diagnosed with ALS the year before, and my academic performance was collapsing. But the real reason became clear: I had ADHD. With a diagnosis, support plan, and the right tools, I finally had the ability to learn in a way that made sense for me. 

It’s been 12 years, two (almost three) science degrees and I still half-expect him to walk through the door with his duffle bag, as if no time has passed at all. My dad wasn’t perfect, but he was and still is, my hero. I miss him every day. Many graduate students are frequently asked how they maintain motivation and focus for so many years. For me, it’s easy when you can relate to the very people you’re trying to help. Many days, there’s a lot that doesn’t work in the lab, but science is a process of refinement. It takes a careful cocktail of patience, dedication, and a pinch of luck (or ritual sacrifice) to succeed. My work might not necessarily lead to the cure for ALS, but I hope that maybe, some part of something I’ve done will inspire something (or someone) that will. 

“In My Words” is an ALS Canada story series illustrating life impacted by ALS through first-person storytelling. Whether that’s through the written word, audio, art, music, etc., community members will share their experience in their own way. 

My name is Tre Archibald and I was diagnosed with ALS at just 23 years old.  

I first noticed symptoms in high school — constant muscle twitching, soreness, and stiffness. I was a healthy, active teenager, so it didn’t make sense. I’ll never forget learning that the average life expectancy is just two to five years. Nothing prepares you for that. 

At the time, my life was just beginning. I had taken out a loan to set up a farming business in my hometown of Strongfield, Saskatchewan. And I was in year four of military service, working through my master corporal’s course.  

And then I was told I have a fatal, degenerative disease. Farming was put on hold. I was medically discharged from the military. And I was overwhelmed with worry — not just for myself, but for my parents and brothers. I didn’t want them to feel the pain of watching ALS slowly paralyze me. 

Thanks to decades of donor-funded research, I’m now receiving a treatment (Qalsody) that’s slowing the progression of my specific type of ALS and helping preserve my independence and hope.  

June is ALS Awareness Month in Canada. It’s a time for reflection, empathy, and action. This month, I’m reflecting on the impact compassionate donors have had in changing my life following my diagnosis. But this isn’t the reality for all people living with this devastating disease. 

ALS continues to progress rapidly for thousands of Canadians. For these families, time is everything. That’s why ALS Canada is looking to welcome 30 new monthly donors this month—to help accelerate progress toward a world free of ALS. 

Let me tell you why now is the perfect time to become a monthly donor: 

Your gift will be matched. The first 30 monthly donations will be matched for three months by generous supporters* — doubling your impact.  

You’ll support vital programs, including: 

• The ALS Canada Research Program, the only national source of dedicated funding for ALS research, supporting the most promising peer-reviewed research to advance the understanding and treatment of ALS.  
• Online support groups that provide comfort and connection.  
• The ALS Canada Canadian ALS Learning Institute (CALI), where people can learn about ALS research and advocacy to become ambassadors for the ALS community. 

As a thank-you, ALS Canada will send you a free “United in ALS” tote bag when you become a monthly donor. 

These days, I’m grateful that my family can see me living independently and running a farm— not declining from ALS. I’ve learned so much since my diagnosis five years ago. And while ALS is devastating, there is real hope on the horizon.  

You can be part of that hope. Join us in fueling research breakthroughs, like Qalsody, that are changing lives. All it takes is a monthly commitment — just click the link and take action today. 

*Up to a maximum of $1,800. 

Supporting change for a better future isn’t something new for Patricia. For 22 years, her role at the City of Toronto focused on communicating and educating the public on a wide variety of environmentally friendly programs – emphasizing her passion for acting responsibly to offer future generations a healthier life experience.  When an ALS diagnosis impacted her family, Patricia’s drive to participate in forging change for a better future led her to become an ALS Canada Tribute Donor. 

Patricia’s journey supporting ALS Canada began with a deeply personal connection – when Yuri, the beloved father of her nephew-in-law, was diagnosed with ALS. At first impression, you might see Yuri as a quiet, shy man, but ultimately it was hard to miss the determination and strength he held just below the surface. “He communicated clearly with his eyes, smile, and actions. A kind soul who loved his family dearly, Yuri had a huge heart and was very generous,” Patricia fondly remembers his unwavering generosity and loyalty to his family – a man who gave freely from his heart, especially for his grandchildren. 

Yuri passed away from ALS at 71 – receiving a diagnosis only one or two years prior, “I never heard him complain about his situation. He remained a very proud man to the end.” Since Yuri’s passing, Patricia has worked to keep his memory alive by donating to ALS Canada in his honour – supporting the continuous growth of critical awareness building, advocacy, and research. It’s in her nature to join in efforts that support change for the future and better hope for the next generation, “[We should unite around] providing hope, whether it’s to a loved one or a stranger. Every life is valuable. Every financial contribution makes a difference.”  

As an ALS Canada Tribute donor, Patricia emphasizes the importance of contributing to the hope for change. An ALS diagnosis doesn’t just impact the individual receiving the diagnosis; it ripples to family members, friends, and the broader community as the impacts of the disease progression leave a profound mark on all. Her message to the ALS donor community is simple: “Don’t give up. Your donation matters, however small it is. Every penny counts! Plus, it feels great to take a positive stand and send hope and resources to those labouring behind the scenes who dedicate their lives to finding a cure.”  

Patricia’s dedication to honouring Yuri’s memory is a testament to the strength, resilience, and lasting impact of individuals touched by ALS. “Yuri’s spirit lives on. His legacy remains, and he’s missed and cherished by those who knew him,” Patricia shares.  

You too can honour the memory of your loved ones by becoming a Tribute Donor. When you create a personalized Tribute page, your family and friends will have a dedicated space to make donations and share messages of love and support – allowing you to choose how to honour your loved one in a way that feels right to you. In Patricia’s words, “So much about ALS remains a mystery. Wouldn’t you want the very best odds and measures working in your favour?” 

👋 Hey, I’m Bill Duff—Dad, Navy Veteran, and full-time cyborg. 🤖 

At 29, I was diagnosed with ALS. The average life expectancy? 2-5 years. I’m now rolling into YEAR NINE. (Take that, statistics! 💪) 

Late-stage ALS has turned me into something straight out of a sci-fi movie. I’ve got:
⚡ Wheels for legs (way less cool than Optimus Prime, but still)
⚡ A tablet that speaks with a robot voice (sadly, not Morgan Freeman)
⚡ A vent and trach to keep me breathing (life support, but make it fashion) 

Basically, I’m a real-life Transformer—minus the explosions. But let’s be real… if I could pick my robot voice, it would definitely be Morgan Freeman. What about you? 🤖 Who would narrate your life? 

As a dad, dad jokes are mandatory. My voice is controlled by Eye Gaze, but I tell my kids’ friends I use my mind. They stand there, jaws on the floor, while my daughter just sighs and mutters, “Not again, Dad.” 😂 Gotta keep life interesting, right?  

But here’s the raw truth: ALS is brutal. It’s a relentless thief that steals your muscles, your voice, your independence—everything. And it doesn’t just take from the person diagnosed—it drains families, caregivers, and everyone who loves them. Yet, despite how awful it is, I’ve met the most incredible people—fighters, caregivers, advocates—pushing for better treatments and better care. These people? They’re warriors. They inspire me every single day. 

So, if ALS is this terrible, why don’t I just choose MAiD and be done with it? Simple: because I’m not done. 

MAiD is a deeply personal choice, and I respect everyone’s journey. But for me? I’ve got too much left to do. I was once told to set goals, no matter how impossible they seem. So I did. And my biggest goal? 🚀 To roll my daughter down the aisle at her wedding. To be there for my kids as long as I can. To fight like hell, on my terms, and not let ALS win. 

People ask me how I stay positive. The truth? Some days, I don’t. Some days, ALS feels unbearable. But I made a promise—to myself, to my kids—that I’d keep going, keep laughing, and keep fighting. We all have those days when life knocks us down. I would challenge you to ask yourself, what keeps you going when things get tough? 

I refuse to be just a statistic. 

ALS may be undefeated, but that doesn’t mean I can’t go out swinging. If you could turn into a cyborg with one cool upgrade, what would it be? (I call dibs on laser eyes. 👀🔥) 

If you’re with me in this fight, share this and help spread awareness. One day, this disease WILL have a cure. 

In the meantime, if you want to follow my journey, check out my Facebook page or Instagram at Team Bill Duff. 🚀 

And until then, I’ll keep rolling forward. 

#ALS #NeverGiveUp #CyborgDad #EyeGazeJedi #ALSWarrior #DadJokesForever #ALSCANADA

“In My Words” is an ALS Canada story series illustrating life impacted by ALS through first-person storytelling. Whether that’s through the written word, audio, art, music, etc., community members will share their experience in their own way. 

“Lisa was the backbone. She was a great mom and really involved – full of energy and life.” Monica Bertolo’s sister, Lisa, was diagnosed with ALS in 2018. For the following 18 months, Lisa – a regular powerhouse and go-getter – took on the disease and fought until the end for her mobility and dignity. Rallying behind Lisa, Monica and her son, Hayden decided to run a 10k race to raise funds for ALS – kicking off the beginning of their community fundraising journey. Since 2019, the Bertolo/Sallows family has taken on intense physical challenges – from 10km runs to Spartan races – to raise funds and awareness in honour of Lisa’s journey with ALS, knowing that the way they’ve challenged their mind and bodies isn’t even close to as challenging as what Lisa navigated living with ALS. 

After COVID-19, when in-person races were no longer an option, the family pivoted their fundraising efforts. Spearheaded by the kids in the family – Hayden, Cooper, and Camille – came the idea of repurposing skis and snowboards to build Muskoka chairs, marketing them locally to family and friends and donating all proceeds to ALS Canada. Though assumingly two very different ways to give back, both Run for Lisa and Chairs for ALS illustrate the undeniable ability community fundraisers have to make an impact, unite the community, and spread awareness of the disease. “When people hear about the fundraiser, it gives them the chance to ask questions about ALS and talk about their own experience,” says Monica. “I think it’s important for people in the ALS community to know there are resources. It can be a costly disease, and it’s important to know there is support – even the emotional support of being able to talk to people about it.”

Now, in 2025, the family is proud to take on a Spartan Race to fundraise and raise awareness for ALS once again. “It’s a bittersweet feeling when we complete the course, but it’s how we’re paying homage to Lisa’s journey.” Over the course of their fundraising journey, they have raised more than $23,000 and aim to hit their $10,000 goal this year to continue their support of vital ALS research and support services. “When Lisa got sick, ALS Canada helped us immensely through support services and equipment. She had to use a computer to speak, she couldn’t communicate – and all of the gear we got – we couldn’t have done it without ALS Canada, so we wanted to give back.” 

“There’s no right or wrong way to do it – it doesn’t matter how much money you raise, what’s important is that you’re doing what you can. At the very least, we’re spreading education and awareness.” From tackling obstacle races to building chairs, the Bertolo/Sallows’ have put their big ideas into action to honour Lisa and change the future of ALS – and they believe you can as well. “It doesn’t matter how old you are or what the idea is, just do it. Start small – it doesn’t have to be this big plan,” says Monica – reminiscent of their initial start of Run for Lisa, from a mother and son duo to a large family and friend affair. “You do what you can – if you feel passionate about it, do it.” 

“We are so fortunate to even do this. We are thankful every day that we can do things Lisa couldn’t. That’s what keeps us going – we are thankful.” If you are interested in starting a fundraiser, check out our ALS Canada Community Fundraising Events page and explore your options. 

Amanda Tam has been navigating life with an ALS diagnosis since late 2021. Just entering her 20s, a terminal diagnosis is not something any young person would anticipate facing. Still, when confronted with it, Amanda chose to share her story online in hopes of raising awareness. Amassing thousands of followers on various social media platforms, her videos, entwined with “dark humour”, illustrate life with ALS with the aim of drawing attention to the fact that ALS can impact anyone.  

In her words, hear from Amanda in the video below.

“In My Words” is an ALS Canada story series illustrating life impacted by ALS through first-person storytelling. Whether that’s through the written word, audio, art, music, etc., community members will share their experience in their own way. 

Since 2023, ALS Canada and the Kevin Daly Bursary Fund have sought to support post-secondary students with a personal connection to ALS in their academic pursuits while experiencing the hurdles of financial burden and responsibilities of being a caregiver. In 2024, the second year of the ALS Canada Kevin Daly Bursary, four students were each awarded $2,500 to support their studies for the 2024-2025 academic year. This year’s recipients, Emma Heaney, Tristan Hopkins, Alexandra McLaren, and Zachary Wood have demonstrated exceptional dedication to advancing the care and treatment of people living with ALS through their involvement in community fundraising events, awareness building, and volunteering.  

Meet the recipients of the 2024 ALS Canada Kevin Daly Bursary 

For Emma Heaney, 23, her father, who has lived with ALS for more than 14 years, is the driving force for starting her Master of Science in Occupational Therapy at the University of Western Ontario in London, Ontario. “Throughout my career as an occupational therapist, I want to help people with ALS and their families in the same way others in this field have done for my dad and my family. I know that my personal experiences will help me to make a positive impact on the ALS community. I am proud to represent my dad, Brian, through receiving this award,” says Emma. “And I am committed to a world free of ALS.”  

The financial and legal planning aspects that come with navigating ALS don’t only fall on the shoulders of the individuals living with the diagnosis – it is often a process that touches many loved ones. Tristan Hopkins, 24, was inspired to pursue a career in law to help other families in need of end-of-life legal aid by focusing on wills and estates after helping his father, Dennis, in preparing his will before his passing in 2023. Tristan is in his second year in the Juris Doctor Law program at Queen’s University in Kingston, Ontario, and has mentored students experiencing health issues within their families. “I am grateful for the support of Kevin Daly, his family, and the ALS Society of Canada for supporting my education through the ALS Canada Kevin Daly Bursary. I now have the privilege of continuing my education during the most difficult period of my family’s life,” he says. “I am motivated to use this scholarship to ensure my family can live a happy and healthy life – the one my father envisioned for us.” 

Influenced by her father, who passed away from ALS, Alexandra McLaren, 24, intends to dedicate her life to supporting people facing neurologic diagnoses as a neurologist. In her third year of the MD program at the University of Toronto in Toronto, Ontario, Alexandra appreciates the financial support from the Daly family and ALS Canada, “I was honoured to receive this bursary in recognition of my resilience, and I feel empowered to follow my dreams with confidence. The kindness of the Daly family is inspirational, and I hope to one day help students achieve their goals and help alleviate financial burden just as they have helped me.” 

Just beginning his post-secondary studies, Zachary Wood, 17, has chosen to pursue engineering at McMaster University in Hamilton, Ontario. Zachary is inspired by his father’s decade-long battle with ALS and the impact technology has had while the Wood family navigates the disease’s unpredictable rate of progression. “I was eight when my father was diagnosed with ALS. It robbed me of years of him being active in my life. I will study engineering with the hope of having the tools to develop devices to help people with disabilities. The ALS Canada Kevin Daly Bursary will significantly help me realize that goal.”  

The impact of a loved one’s ALS diagnosis is devastating on young people just beginning to plan their lives – demanding a reroute to navigate new hurdles in their academic and personal ventures. Support from the community plays a critical role during the journey. The Kevin Daly Bursary Fund was created as part of a lasting legacy, celebrating the life and character of Kevin, a devoted father and husband, who received an ALS diagnosis in 2020. He sought to uplift families within the ALS community and support young people in reaching their goals and pursuing their dreams. In November 2024, sadly, Kevin passed away. His unwavering determination to create lasting change and an opportunity for everyone to thrive can be seen through the success of the Bursary Program and the young people who find support through it now and into the future. 

On a daily basis, everyone here at ALS Canada is reminded of the incredible strength and connection of our community. There are tens of thousands of us who have never met in person, but we are united in the spirit and energy we pour into our shared goals. 

United in your support for groundbreaking research, vital services, information and resources, and amplified advocacy efforts – it’s our supporters that bring us closer to a world free from ALS. But there is still further to go. At ALS Canada, we have a broad mission. Our work is dependent on the generosity of donors to help us reach our vision of a world free of ALS. That’s why donating today is so important in helping our work continue.

How your donations help:

• Advance research: Every dollar you give helps fund critical research across Canada and around the world, ensuring we remain at the forefront of ALS research. Our initiatives not only enhance our understanding of ALS but also support the development of treatments that may improve and extend lives.
• Empower with support: Your contributions allow us to offer comprehensive support services tailored to meet the needs of Canadians affected by ALS. From equipment loans in Ontario to navigating healthcare systems across the country, your generosity makes daily life more manageable for many.
• Drive advocacy: With your help, we advocate for policy changes that prioritize the needs of the ALS community. Your donations empower us to engage with policymakers, ensuring that the voices of people affected by ALS are heard and considered.
• Spread knowledge: By funding educational programs and resources, you help us equip people living with ALS, families, and healthcare professionals with the information they need to navigate the complexities of ALS.

Donating before February 28, 2025 not only provides you with a 2024 tax receipt but also supports essential programs and initiatives that have a direct impact on the ALS community:

• Your contributions help fund the Canadian ALS Research Network (CALS), which is currently engaging in multiple high-impact studies, including projects focused on genetic research and clinical trials for new ALS treatments. These efforts are crucial in making Canada a hub for innovative ALS research and therapy development.
• Your gifts fund ALS Canada’s Canadian ALS Learning Institute (CALI), offering webinars and resources that inform people living with ALS, families, and healthcare providers about ALS management, new research findings, and how to advocate. This knowledge empowers the ALS community to engage in consultations with their lived experience, to make informed decisions, and better manage their health.
• Donations like yours enable us to effectively advocate for the needs of the community, and led to the success of the Ontario Provincial ALS Program, to fund multi-disciplinary clinics and ALS Canada Community Services. There is much work still to do, in the province and across Canada including help navigating healthcare systems across the country. Your generosity makes daily life more manageable for many.

United, we can continue to impact the lives of people affected by this relentless disease. Will you help with a gift? Every contribution you make before December 31 not only helps us move closer to a cure but also offers you a charitable tax receipt. Donate today.

When my husband, Don, was diagnosed with ALS in 2021, one of the things I immediately felt was that I was no longer in a safe space. Don had been my anchor since we met when I was barely 20 years old. If I had a bad day and couldn’t give 100%, he’d take over the rest. That goes away when you become a caregiver. You always feel like you must be at 110%. I had another caregiver tell me once, “I just keep moving, because if I stop to rest, I might fall over,” and that’s nothing short of the truth. Long before ALS takes your loved one from you, you have already begun to lose them. You lose dreams about the future; you lose everyday normalcy, and suddenly you’re thrust into this very scary and uncertain place.  

MAID (Medical Assistance in Dying) is often used in the context of people opting for it due to lack of support and resources. However, there are several individuals living with ALS who opt for MAID because they want to. MAID is sometimes referred to as “dying with dignity,” and some choose this option to say that they have had enough and that they are ready to end their ALS journey on their own terms. 

Don chose to opt for MAID within hours of diagnosis. He has a demarcation point of what he is willing to lose to the disease and what he isn’t. Don focuses on quality of life and not quantity. He wants to be supported by his caregivers but doesn’t want to rely on them – he does not want to be fed or dressed, live in a wheelchair, use a feeding tube, or rely on breathing assistance. He wants to live independently. He is focused more on his family than himself. He doesn’t want me to give up my career or strain our family finances for things that he believes are short–lived.  

As far as caregiving goes, Don’s decision to opt for MAID changes things. I don’t have to provide care in the most traditional sense. My level of caregiving involves taking on all of the family and household responsibilities and maintaining income for our family. I have to be a lot more creative because I’m not trying to sustain his life, I’m trying to sustain his independence because when that is gone, he will be too.  

When people think about someone close to death, they don’t imagine someone who is able to walk around the house, eat normally, or talk and breathe without assistance. Everything people tell you to prepare for with ALS are things that our family will never experience. We have to prepare for things such as when he will choose to die. I am prepared for him to die soon. Others still see him as having a long way to go.  

As humans, we tend to look for similar stories or experiences to relay our fears and make us feel less alone. When I went looking for stories, I found many. However, I noticed that the published stories were so different from the lived experience of many of us. These stories were positive. They talked about taking early retirement to be together, completing bucket list items with their families, running one last marathon, writing a book, and even getting married. They didn’t talk about anticipatory grief, financial hardships, losing your spouse before you lose them, or worrying about an uncertain future. It made me feel like we were dealing with it all wrong. That is until I got involved in several areas of advocacy across Canada and started to meet more people going through the same thing we were. I remember meeting another woman whose husband had been newly diagnosed. She reached out to hug me while shouting through tears, “You understand it, you’re the first person to understand it.”  

I want people to remember that not every family’s experience facing ALS is the same. There is no right or wrong way to do this. There is no playbook. We may all be in the same storm, but each one of us is navigating it in a different vessel.  

“In My Words” is an ALS Canada story series illustrating life impacted by ALS through first-person storytelling. Whether that’s through the written word, audio, art, music, etc., community members will share their experience in their own way.

Watch how our community comes together in a powerful message of unity.

We’re excited to share a very special video that brings to life the unity and strength of our ALS community. It features individuals affected by ALS, like our ALS Canada Community Ambassador, Andrew Dundas, in the image above, their families, and some who have lost loved ones, coming together to share a message that resonates with all of us.

Watch it here, and if it inspires you, please share it on your social channels to strengthen our unity as a community. Together, we can make a greater impact and continue our fight against ALS.

Thank you for your ongoing support and dedication to our cause.

I stood outside the Hamilton hospital gutted, trembling, in shock, my mind racing.

Minutes earlier, in what I thought was another test that would rule out anything serious related to my weakened hand, a neurologist uttered the words I had dreaded: “Steven, I’m sorry, my diagnosis is ALS.” He offered words of encouragement, assuring me I would soon start a relatively new treatment. I appreciated his compassion and support, but I wasn’t paying attention. I just wanted out of that exam room. This had to be a bad dream.

I was only 47 with a young family. I was fit and loved being active, especially chasing my five year-old daughter around a playground. How could a weakened hand be the early stage of a terminal disease that would eventually ravage my entire body?

This wasn’t the way things were supposed to go, I thought as I stood outside the hospital waiting for my family to pick me up.

Dying consumed my thoughts in those early, dark days after my diagnosis five years ago.

But darkness eventually turned to light as my focus shifted to living — seizing each day with loved ones, making new memories and raising awareness about a disease I knew little about.

Fast forward five years, and my life looks a lot different as I lie in a hospital bed in my home writing this blog using only my eyes, connected to machines keeping me alive.

Still very physically active for two years after diagnosis, I began to experience mobility and breathing issues as the disease targeted every muscle in my body. Today I can no longer walk, speak, swallow food, and I rely on a breathing machine 24/7.

Despite the toll ALS has taken on me and my family, my heart is filled with gratitude.

Gratitude for the incredible support of my caregiver and best friend, Tiffany, who is also an amazing mom to our now 10 year-old daughter, Olivia.

Gratitude for the new memories I made following my diagnosis, including several trips to the East Coast with Olivia, so she could experience the beautiful area where I grew up.

Gratitude for a healthcare system that provides me with an extraordinary team of personal support workers and nurses so I can safely stay in my home.

Gratitude for the guidance and support we have received from ALS Canada.
And gratitude for the eye-gaze technology I started using last year that gives me a voice, even though ALS has robbed me of my speech.

The device, which tracks my eyes as I choose letters and words on the screen, has allowed me to continue sharing my journey on social media and through media interviews to shine a spotlight on a disease that deserves more exposure.

It gives me a sense of purpose to join ALS Canada and other ALS warriors advocating for advances in care, equitable and affordable access to therapies and increased research opportunities.

Reflecting on the past five years, I’m heartened by the promising research and emerging treatments aimed at slowing the progression of ALS.

Now in the latter stages of the disease, I continue to hold onto hope.

Hope that one day ALS will be a condition people can manage and live well with for a long time.

Hope that a newly diagnosed dad can see his young daughter grow up, pursue her dreams and chart her own path in life.

“In My Words” is an ALS Canada story series illustrating life impacted by ALS through first-person storytelling. Whether that’s through the written word, audio, art, music, etc., community members will share their experience in their own way.

My name is Sam Najjar and I have personally experienced the impact of ALS. Fourteen years ago, my father was diagnosed with ALS, and our lives were changed forever. Watching him face this disease was incredibly hard, but his strength and resilience have inspired me to join this fight.

June is ALS Awareness Month, and I’m excited to share some amazing news with you. The ALS Society of Canada has set a goal of welcoming 30 new monthly online donors, and your support can make all the difference.

Let me tell you more about this offer, and why it makes our community stronger.

A generous board member from ALS Canada has offered to match your monthly donation for the first three months! This means your gift will have double the impact, reaching more families, and funding crucial programs and support like:

• Community and virtual programming, including new wellness workshops that are open to anyone across the country.
• Online support groups that provide comfort and connection.
• The ALS Canada Canadian ALS Learning Institute (CALI), where people can learn about ALS research and advocacy in a supportive environment.

ALS Canada does not receive government funding making them 100% donor-funded. That means every bit of support is only possible because of donors like us. Believe me when I say, this kind of support helps people like my father every single day.

So, let’s unite in our kindness and support for one another. Together, we will work toward a world free of ALS. As a thank you for your monthly donation, ALS Canada will send you a special free “United in ALS” tote bag.

Thank you for being part of our mission with us. Your support means the world to people and families affected by ALS. My father’s memory lives in every monthly donation I make. I know he would be proud of its impact, funding critical research, advocacy, and community support that will lead to a world free of ALS. All you have to do to join me is use this link and make a monthly commitment right now!

United in ALS,

Sam Najjar

Mark Kirton faces ALS with the mindset of a pro athlete. He played in the National Hockey League from 1978 to 1988 for Toronto, Detroit and Vancouver and then followed that up with a successful career in real estate in Oakville, which he still runs from home. In the spring of 2015, Mark started feeling muscles in his right bicep twitch, and he was getting weaker. Then other things started happening – he would fall randomly or drop a dumbbell that wasn’t particularly heavy. “The disease moved around like a clock – going from right arm to left arm, to left leg to right leg, and it caused a lot of damage along the way,” he says.

For Mark, who received his ALS diagnosis in 2018, the progression of the disease has been humbling and cruel. “It’s almost like when you’re trying to make it to the National Hockey League and you’re so disciplined and so driven – nothing is going to stop you. That’s the attitude I had to take – that nothing would stop me from keeping with my same personality. I won’t allow depression to seep in.”

After he got the devastating news, Mark listed as many current and former pro-athletes he could think of who have or had ALS and came up with 80 names in an hour. He’s reached out to some to talk about their shared experience. “What really is amazing about all of these ALS inflicted people is that they are so positive, it’s like they have hearts of lions,” he says. “I try and talk to some that reach out to me to try and boost them up and give them some positivity, but there’s a lot more I’d like to get a hold of in this journey.”

ALS has had a profound effect on Mark’s family, who are also his caregivers. He will never forget the look on his 15-year-old daughter and his wife’s faces when he took a fall in February trying to shut off the TV. “It’s a helpless look,” Mark says. “Here’s a former NHL player who used to have the strongest legs in the world. … I try not to, but you can’t help but letting thoughts jump into your head like, ‘I want to be around when my daughter gets married.’ You start thinking about the future like that, but you’ve got to catch yourself and think about today. ALS doesn’t just affect me, it affects my wife and kids too, so I have to make sure that I’m very upbeat so everyone else is okay around me.”

“From a positive standpoint, never ever have we been in a position we’re in right now to push forward with awareness,” Mark says. “I think Lou Gehrig Day is massive. MLB came out with a mandate to raise awareness and funds for research, provide some information about the history of Lou Gehrig and ALS and celebrate the groups and individuals who are pursuing cures. Those are some pretty strong mandates.”

In addition to Lou Gehrig, there have been a number of prominent professional athletes who have developed ALS. Some of these athletes include: Jim “Catfish” Hunter (MLB 1965-79), Tony Proudfoot (CFL 1971-82), Chris McCauley (OHL 1979-83), O.J. Brigance (CFL and NFL 1991-2002), Steve Gleason (NFL 2000-06), Pete Frates (Baseball: Boston College Eagles, 2004-07), and Steve McMichael (NHL: Chicago Bears: 1981-1993). While the causes of ALS are unknown, researchers have been studying whether high-intensity sports might be a potential risk factor for ALS.

“It’s unprecedented times right now,” Mark says of the opportunity to raise awareness with Lou Gehrig Day. “I think NFL football should be next – because they have numerous guys that have or had this horrific disease.  They should be next in line to also have a Lou Gehrig Day – why not? – celebrate it one Sunday during their season. I think all of the sports leagues that have former athletes that have ALS should be involved in this, until we have a cure. … ALS has been kind of a forgotten illness. I think with MLB’s awareness activities on June 2, and the community’s participation in Walk to End ALS events in Ontario on June 20th, let’s hope that some of the other leagues take notice and do something.”

Baseball has always been a special part of the Cels family. Mike Cels played the sport through high school, switching to slow pitch as an adult and playing it at a competitive level for most of his adult life. After he was diagnosed with ALS in 2017, he and his wife Carmen checked off a bucket list item when they traveled to Dunedin, Florida for the Blue Jays’ spring training. Their children played t-ball when they were younger and have been to many Jays games with their parents, who are both avid fans.

“The Jays were the one team we could all agree upon,” Mike says. “We formed family memories such as son Jonathan losing a tooth at a game. Or the time our daughter Cynthia got to be on the field and up on the jumbotron singing the national anthem with classmates. From souvenir jerseys to hats, scarves, banners, pennants and foam fingers we can be easily spotted as eager fans.”

Since Mike’s diagnosis, the family has gone to see the Jays at the Rogers Centre in 2018 and 2019 from the Sightlines restaurant so that he could still access the game while using his wheelchair and walker.

When they heard that the Major League Baseball community was rallying together for Lou Gehrig day this year, the Cels were excited. “As someone living with ALS, I am glad to see Major League Baseball take on this cause recognizing that since his passing in 1941, Lou Gehrig has been permanently associated with the disease,” Mike says. “As a result Major League Baseball is uniquely positioned to raise awareness of ALS and the fact that it can affect almost anyone at any time.”

“I would also like the broader community to understand that since Lou Gehrig’s death we still don’t know what causes the illness – that there is still no cure and very little in the way of treatment. At the same time there is great promise and excitement in research, so we need their support to keep the momentum going and one day bring an end to ALS.”

With the pandemic, there haven’t been opportunities to take in a game at the Rogers Centre, but the Cels look forward to when they can see the Jays in action. At least once a year they have seen a game in person, whether for celebrating birthdays and Father’s Days, or as a fun activity with out-of-town visitors.

“For us, the Blue Jays and going to a game brings a little bit of joy to our day, and anything I can do to get Mike out there and experiencing something other than the day-to-day is something we would definitely look forward to,” Carmen says.

For Carmen, Lou Gehrig Day is about shining a light on the realities of ALS. “I had always assumed there was some kind of relationship between MLB and ALS patients, and I’m glad there is something formal,” she says. “It means bringing more awareness to ALS – it could mean much more education about the devastating impact of the illness, and therefore how it would impact families and caregivers – helping to open the window as to what living with ALS looks like.”

“We hope the MLB and the Blue Jays in particular would consider making this an annual cause – that they would consider making donations and raising awareness on the day and increasing accessibility and access to the games and maybe the players, to make those games very special,” she says. “I think that would be great for Major League Baseball and for ALS across Canada and the United States.”