The landscape of ALS research is ever-changing, as researchers continue to increasingly make developments towards a common goal shared by both the research community and those personally impacted by ALS – to improve quality of life for people living with ALS and to develop more effective therapies, as quickly as possible. At the three-day 2023 ALS Canada Research Forum, we were able to gather in-person for the first time since 2019, directly connecting the world of research to the community experience and enthusiastically convening around a collective commitment to the cause – learning, connecting, and collaborating for change.
This year’s event featured presentations from fundamental researchers, clinicians, and junior researchers from across the country. Things kicked off with an engaging presentation from Dr. Timothy Miller, an instrumental researcher in the development of tofersen (Qalsody), regarding novel therapeutic approaches to treating ALS and highlighting the genesis of the development and evolved trial design of the recently FDA-approved therapy.
The in-depth look into the inspiring discoveries of today sparked key discussion throughout the weekend between researchers and members of the ALS community – the connection serving as a reminder of why we do the work we do. As one participant had to say, “[…] it felt like everyone took away an impactful moment. Something that will help each of us push forward with replenished motivation to fight. Whether it be a personal one, a lived experience or contributions to the long, but not impossible task, of creating a world without ALS, we all have one common thought in mind.”
The Research Forum provided an opportunity for researchers, whether students, postdoctoral fellows, or seasoned investigators, to get together and ask questions, form new ideas, and seek avenues of collaboration. “Every year I feel a renewed sense of hope, inspired by the abundance of knowledge, passion, and dedication everyone brings together in one place in efforts to end ALS,” commented one participant.
Throughout the event, we heard 27 diverse presentations discussing translational and clinical research, fundamental research, and brand-new research being done by young investigators in the field. Each presentation provided not only direct informative take-aways, but simultaneously an opportunity for diverse discourse and questions between researchers, clinicians, and people affected by ALS. Members of the community affected by ALS have a vested interest in research, not only wanting to see treatments that change the reality of the disease but to talk to researchers, understand their work, and provide unique insights – expanding the bounds of what we can learn from each other. This remains a key aspect that the Research Forum continues to cultivate – offering a unique, and diverse avenue of conversation and knowledge exchange between all groups of participants. “I learned more about ALS over the past two days than I have in the past 20 years. I also met some of the most amazing and inspirational clinicians, researchers, sponsors, and of course, people living with ALS and their families,” said one participant.
If there must be only one take away from this year’s Research Forum, it was best said by one of our participants, “staying connected makes us stronger.” The ALS Canada Research Forum is an eye-opening Canadian hub for exceptional connection between all individuals tirelessly working towards and supporting changing what it means to live with ALS.
The ALS Canada Research Forum is made possible thanks to the generous support from platinum sponsor Mitsubishi Tanabe Pharma Canada Inc. (MTP-CA), gold sponsor Amylyx, silver sponsors QurAlis and Biogen Canada, and bronze sponsor Cytokinetics. We thank them for their support of knowledge sharing and capacity building between researchers, clinicians, and people affected by ALS.
I am an ALS scientist. For years, I have been spending my days conducting research in the lab. We are always trying to find the next big discovery, and today I want to tell you something: the biggest discovery of my career almost didn’t happen. But it did, thanks to ALS Canada. And thanks to their generous donors.
Years ago, we were studying the tiny junction between the nerve cells in our spinal cord and our muscles. For years, conventional research had told us this junction wasn’t relevant for ALS research. It was neglected and overlooked.
Due to the long-held belief that paralysis happens in ALS because the motor neurons die, many of my colleagues were surprised when I started applying for funding to help us research this tiny nerve junction further. ALS Canada saw the potential in this research when nobody else would, and they took a risk. With the support of donors, ALS Canada offered me a research grant so I could continue the investigation. On behalf of my research team and the ALS community who serves to benefit from this discovery, thank you to everyone supported these efforts.
Because of that ALS Canada research grant, we now know that there is significance to this research that other scientists had once dismissed. We have proven these tiny nerve junctions don’t simply die when people develop ALS, which is what scientists believed before. We now know that’s not the case! This research unlocked the most important first step, and now that we know “what,” we are working hard to understand “why” this happens.
What started as scientific curiosity became a breakthrough discovery thanks to ALS Canada’s supporters. When I started, there was only one researcher helping me with this work part-time. Now, I have an entire lab of researchers dedicating nearly all of their time to this work. The momentum is building, and I can truly feel the excitement in the lab every day.
Thank you to all who support ALS Canada. Because you do, my important research is possible. Without your support, I may not have been able to continue. But because of you, I still can.
I can’t wait to see where it goes next.
Sincerely,
Dr. Richard Robitaille
ALS Canada funded researcher
Professor, Department of Neurosciences, Université de Montréal
Member of ALS Canada Scientific and Medical Advisory Council
If you’d like to make a donation today, you can do so by clicking this link.
Margot Algie heard about the ALS Ice Bucket Challenge in 2014 through friends and had no idea that only one year later, she would be diagnosed with the disease.
Since then, she has come to understand firsthand the importance of maintaining the momentum of the viral social media phenomenon that resulted in a $21.5M investment in Canadian ALS research. Margot is urging everyone around her to take the plunge and join the fight to end ALS. “Please, please, please take part in the ALS Ice Bucket Challenge,” she says. “It’s time to put another huge chunk of money towards research so we can find new drugs that can hold ALS at bay. We have to stop this disease from killing us.”
Despite the challenges Margot faces on a daily basis, she is the kind of person who always pushes through. “I won’t give up and say ‘woe is me,’” she says. “I just keep finding ways to overcome or compensate, whether it’s using an app to help me type, or adapting to my motorized wheelchair that was provided by the ALS Canada Equipment Loan Program.”
It’s hard to accept that everything happens at a “snail’s pace” these days, but patience is one of the qualities Margot is drawing on to settle in to her new routine. “Once you’ve got one new thing down pat, it seems there’s some other hurdle you have to adapt to just around the corner,” she says, “but I am more patient with others now, and more patient with myself. I’ll give you an example: instead of raising my voice in frustration and perhaps uttering choice expletives, I’ll take a deep breath, smile and say bring it on.”
When Margot was diagnosed with ALS, her colleagues at ICE (Integrated Communications and Entertainment) organized their own challenge by throwing a big “Bucket List” fundraising event for Margot. The goal was to raise enough money to check off as many of her own personal bucket list items before the effects of the disease progressed. Because everyone progresses through ALS differently and there’s no way to know the course it will take, time was of the essence.
“The best part about the event was the chance to reconnect with people I hadn’t seen in more than a decade,” says Margot. She is also tremendously grateful for the overwhelming show of love and support and overjoyed by the chance to tick off many items on her list, including her number one wish, to see Van Morrison perform live at a dinner theatre in Ireland. “There was a huge sense of community that really turned my thinking around. It gave me a reason to keep living with the time I have left,” she recalls.
Time is often on Margot’s mind. “I dwell in the short term,” she says. “I think about what I have to do today and how much time it will take to do.” Waking up each day brings new challenges that are harder and harder to overcome. She responds by trying to cherish each moment. “I am literally stopping to smell the roses,” she says, “hoping I can reach out and pull the branch towards my nose so I can take in the scent.”
Sadly, some bucket items are no longer within reach. Margot has always loved dogs. She owns a boisterous 13-month old English Setter, Charlotte. Though her wheelchair gives her the independence to accompany her partner, Roger, on their dog walks, she can’t control Charlotte on the leash on her own anymore. Even hugging her puppy is difficult. “If I could, I would have gobbled her up and cuddled with her while she was growing up, but instead I try just to pat her,” explains Margot. “By the time I get my hand near her she moves and I can’t do it because my motions are so very slow.”
“This is the start of a new chapter, perhaps even a new book,” Margot says in a moment of reflection. Her resilience and determination to make the most of each day help her accept the fact that she can no longer work or get out of the city on weekends like she used to. Receiving support has helped, including equipment from the ALS Canada Equipment Loan Program that would have been difficult to purchase on her own. In turn, Margot is giving back to the community by fundraising for the Walk to End ALS and facilitating ALS support groups at the Sunnybrook ALS Clinic in Toronto.
There is no time to waste. ALS is devastating the lives of 3,000 Canadians and their families every year.
It’s about time we added “end ALS” to the bucket list – take action today. Your generous support will help provide community-based support services for people and families living with ALS in Ontario; it will contribute to funding research and to federal and provincial advocacy initiatives within Ontario.
Join Margot’s fight to end ALS.
“When you start researching ALS, it becomes a life mission,” says Dr. Janice Robertson, a prominent figure in the ALS research community in Canada and abroad. Dr. Robertson is studying variations within the brain and spinal cord of people living with ALS using two powerful new technologies that allow researchers to examine the nuclei of about six thousand single cells at a time. The goal is to gain a better understanding of how ALS progresses in the search for new treatments and a cure.
Dr. Robertson’s early research focused on Alzheimer’s disease but coming into contact with people living with ALS changed the course of her professional life. “I was doing my PhD in London, England and the lab I was working in was next door to an ALS clinic,” she recalls. “I would see people coming to the ALS clinic, and then coming in with walking sticks and then wheelchairs and then they didn’t come in anymore. ALS can move so rapidly. It’s such a horrible disease.”
In 1997, Dr. Robertson accepted a fellowship working alongside two key ALS researchers in Montreal, Heather Durham and Jean-Pierre Julien. Her original plan was to stay in Canada for two years, but her research took off, and landed her at the Tanz Centre for Research in Neurodegenerative Diseases at the University of Toronto.
One of the attractions of working at the Centre was the number of researchers working on other adult-
onset neurodegenerative diseases like Alzheimer’s disease and Parkinson’s disease. “It was a good place for me to develop an ALS research program,” says Dr. Robertson, “because these diseases are all linked and we can learn from one another, sharing ideas and techniques, and informing each other about our research.” Another important factor was the strong degree of collaboration among ALS researchers nationally and internationally, and opportunities for scientists, health care professionals and people living with ALS to make meaningful connections including at the ALS Canada Research Forum, hosted by ALS Canada every year.
Engaging with patients at the ALS Canada Research Forum and through her lab-based work with the ALS Clinic in Toronto continues to be highly motivating for Dr. Robertson and her team. They have been building a successful ALS research program over the last 15 years, collecting complete clinical patient histories, blood for DNA samples, and even analyzing the brains and spinal cords of people who have donated their bodies to science. “You have no idea the sacrifice these people make — time is not on their side, yet they give countless hours to be involved in our research. They’re incredibly courageous,” she says
Thanks in part to the success of the 2014 ALS Ice Bucket Challenge and the $21.5 million invested in Canadian ALS research as a result, researchers like Dr. Robertson, are confident that earlier diagnosis, new treatments, and the possibility of halting or slowing the disease progression are closer than ever before.
“I’m doing research now I couldn’t have dreamed about a few years ago,” says Dr. Robertson. “New technologies – like the new MRI-guided focused ultrasound for delivering therapeutics to the brain and spinal cord – are so important for moving this field forward. But these new technologies are also expensive and if you don’t have the money, you can’t move forward.”
The case for insisting on sustained support for people living with ALS is compelling, no matter how you look at it. “For some individuals, from diagnosis of their very first symptom to death can be six months,” says Dr. Robertson. “Fifty per cent of people die within 18 months; 80 per cent of people die within two to five years.” It is difficult to argue that change cannot come soon enough.
“Without research, we won’t find a cure,” says Dr. Robertson. “I think there’s confidence that within the next several years something really impactful is going to happen. But whenever you say something like that to someone with a rapidly progressing disease, they say, ‘well that’s no good for me, because I won’t be alive to see it.’”
“And that’s why time is of the essence, it’s not only for the future, it’s for the people living now with this disease.”
Help ALS researchers in Canada get more answers.
Beth Robertson’s husband, Tim, lived courageously with ALS for 12 years. He was sustained by the loving presence of his wife, Beth, his three children, and a large network of family and friends. Beth says she would do it all over again for Tim, but she admits ALS is a terrible burden for everyone it touches.
Looking back, Beth says Tim’s selflessness helped keep the family resilient and supportive with each other. “He let us continue to lead our lives. It helped that I kept my job teaching,” recalls Beth. “It was good for me and it helped Tim and I remain strong as a couple. I got frustrated when people called me a caregiver not his wife. I was his wife. We were husband and wife living with this thing and we just kept going.”
80% of people diagnosed with the disease will not live as long as Tim did. “ALS dominated every aspect of our lives. I can hardly remember what it was like before, but I remember every single moment when Tim was living with it. Every time he went into a little slump. Every time you’d see a decline. Where he sat on the back deck watching me garden when he couldn’t garden with me anymore.”
When Tim survived beyond the average two-to-five-year prognosis, Beth remembers imagining the possibility of more time with him. She hoped he might live a long life like Stephen Hawking, but she also harboured fears about how challenging it would be to live without hope of a treatment to stall or reverse Tim’s symptoms and how challenging symptom progression would be for the family.
“There’s no blessing in this. It’s a tough journey,” admits Beth. “Even though we had more time and Tim was fortunate to see his children graduate from high school, it’s hard to give a positive final message that is honest.”
Today, she is hoping for greater investment in ALS research so that researchers can better understand why people have ALS and how treatments can halt the disease early in its tracks. That’s why Beth participated in the ALS Ice Bucket Challenge three times and why she hopes the momentum will continue. “One time, I dumped the bucket on Tim in his wheelchair and then on me. I was so focused on me that I didn’t realize Tim still had a pile of ice on his head. Poor Tim,” she says. “I felt so bad for him. He never complained though.”
Investing in research is a priority for Beth but she is also deeply concerned about the availability of direct support for families living with ALS. She says ALS Canada plays a critical role by providing equipment, education, and emotional support but as a donor-funded organization it can’t do everything. It’s time for the federal government to do more to relieve some of the heavy financial burden on families living with ALS. “We were lucky to be able to afford things like retrofitting a van,” says Beth. “But what about the people who don’t have the money? I can’t imagine what that’s like.”
She says it’s also time for provincial governments to step up. In long term care homes for example, people relying on BiPAP machines to assist with breathing can be and have been refused access because of a shortage of trained staff to handle the equipment. “If people are going to live longer lives with ALS as a result of new treatment options, we need to make sure there are more resources in place to help them and support their families, including access to facilities and additional home support” insists Beth.
Now that Tim is gone, Beth is continuing to fundraise and volunteer for ALS Canada to help change the future for others. She’s giving her time because there’s no time to lose.
“I love volunteering in the office once a week. Everyone is so passionate and works so hard. I can see firsthand how well ALS Canada invests the money they raise,” says Beth.
Beth is on a mission to change the future of ALS – a future with no more loss and no more heartbreak.
Like many people, Denis and his husband Tom were familiar with the Ice Bucket Challenge that became a social media phenomenon in the summer of 2014 – but they never imagined they would one day have a personal motivation to participate.
That all changed in 2015 when Denis was diagnosed with ALS. From that point onward, the future he and Tom had planned together was irrevocably altered. Denis’s diagnosis sent the couple into a period of depression, but they were determined to overcome it and make the most of the time they had left.
They also became motivated to do their part: 2016 was the couple’s first time participating in the Ice Bucket Challenge. They began by setting up a page on the ALS Canada fundraising site, and invited friends, family and coworkers to make a small donation.
When they first started their fundraising efforts, Denis and Tom didn’t know what goal to set for themselves. They decided on $5,000, hoping for the best, and were surprised and thrilled to achieve their goal within 24 hours.
So they decided to keep going. “Denis doesn’t do anything halfway,” explains Tom with a smile. Their final fundraising tally was $10,882.
Moving forward, one of the priorities on Denis’ “Bucket List” is to help make ALS a treatable, not terminal, disease. In doing this, both he and Tom invite everyone to join them in this year’s Ice Bucket Challenge.
“To me, the Ice Bucket Challenge represents so much,” he says. “The social media phenomenon put ALS on the map and gave instant global awareness to the disease. The $220 million raised globally gave the biggest boost to ALS research all over the world,” he continues. “Thanks to this, there are now more researchers working to solve the ALS puzzle than ever before.”
The money raised by the Ice Bucket Challenge in 2014 enabled much more significant investment in research that is already starting to show promise. We cannot afford to lose momentum now.
“We, the 3,000 Canadians living with ALS, our friends & families and ALS Canada, we must all work together to keep the Ice Bucket Challenge alive and strong,” says Denis. “We need to raise money for ALS Research to support people living with ALS. “One day, ALS research will give us a treatment, something to slow down the progression of the disease, or maybe even a cure! There has been more progress in the past five years than in the previous century.”
Denis’ message to ALS researchers in Canada is one of gratitude and motivation. “Thank you for fighting with us,” he says. “Thank you for your hard work and courage in taking on such a challenge. You have my support – my new mission in life is to raise money for your research.”
Living with ALS is not easy and every day presents new challenges. But Denis and Tom have learned to approach life in a new way, to live in the moment, and to make every moment meaningful. Denis encourages researchers to keep in contact with people like him who are living with ALS, stressing the importance of seeing first-hand the physical and emotional devastation of the disease and the hope their research represents.
“Just a smile from one of us will help you stay motivated and eager to continue to do what you are doing so well,” he says.
Denis also encourages everyone to register for the ALS Canada Virtual Research Forum that’s coming up on August 9 and 10. “You might not understand everything,” he says, “but by attending these webinars you will realize that you’re not alone and that there are many people working tirelessly to find a treatment for ALS.”
The ALS Canada Virtual Research Forum will be taking place on August 9 and 10 from 11 a.m. to 5 p.m. Eastern Time. The forum is free and open to anyone interested in learning more about ALS research currently underway and therapies in development. Hosted by Dr. David Taylor, VP Research at ALS Canada, the forum will feature more than 20 speakers and panelists over two days. Advance registration is recommended as spots are limited.
