Each year, ALS Canada convenes the brightest minds in ALS research across Canada at a two-day Research Forum to discuss their work and build capacity for more discoveries in this rapidly changing field. After the pandemic cancelled our plans to host the event in 2020, this year we brought the community together safely in a virtual format. Attended primarily by researchers and clinicians who are presenting information to an audience of peers, the Research Forum also had attendance from people living with ALS and their caregivers, donors, industry stakeholders, ALS Society staff and volunteers.
This year’s Research Forum featured presentations on the latest in basic, translational and clinical ALS research taking place across the country, along with a patient-centred research session and patient community perspectives on research. “Collaboration and knowledge sharing amongst ALS scientists and clinicians is critical to expediting an understanding of the disease and development of effective treatments. The Research Forum continues to be the most important venue in Canada for connecting ALS researchers and for providing them an opportunity to learn more about perspectives of the ALS patient community,” says David Taylor, Vice-President, Research, at ALS Canada.
More than 300 people participated, including 27 from outside of Canada. The event brought together experienced investigators – 18 researchers and clinicians – who presented their work alongside junior ALS researchers who prepared three-minute poster presentations that were highlighted in two sessions and made available in a YouTube playlist throughout the event.
“The symposium was amazing! The positive energy of the moderators was contagious,” commented one participant. “The experts and topics were really spot on to current needs. The platform was very easy to navigate. The organization, activities, poster videos, the best I have seen so far in a symposium online. The way it was organized made the attendance feel very light and engaging.”
Whether it happens in the lab or the clinic, ALS research provides hope to a passionate community with an urgent need: to see treatments that change the reality of living with the disease. Members of the patient community have a vested interest in research, and for the first time, we were pleased to be able to welcome 13 Community Fellows identified through an application and evaluation process. This pilot program made it possible for people affected by ALS to have insight into the breadth of ALS research underway in Canada and connect with those who are leading it.
“The research process, including ALS research, can take up years from discovery to a peer-reviewed publication. The Community Fellows [pilot] program gave me the opportunity to skip through time and learn about Canada’s top researchers work, their vision, and goal for a future without ALS,” said one Community Fellow. “The program connected me with great researchers, ALS Canada team, and most importantly, ALS patients, caregivers and community fellows all across Canada. Everyone I met over the past two days was very generous, listening to our questions and connecting with us. The comprehensive package provided by ALS Canada also gave me an easy-to-use tool to better understand scientific terms used during the research forum. Most importantly, I learned and got inspired by the detection and selfless work of many junior Canadian researchers and the ever-lasting hope of courageous ALS patients and/or caregivers who shared their stories during the forum.”
For researchers, clinicians, members of the patient community, donors and partners, the Research Forum was an enriching and eye-opening experience that highlighted the advances being made in Canadian ALS research while also highlighting the lived experience that depend on continued progress.
The ALS Canada Research Forum event is possible thanks to the generosity of our sponsors. We thank them for their support of knowledge sharing and capacity building between researchers, clinicians, people living with ALS and their caregivers.
