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.
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