ALS Canada

📣 Interested in learning more about the ALS Community’s Federal Advocacy Day on Parliament Hill? Dive into our latest blog post to discover why #ALS community members and ALS organizations from across Canada gathered in Ottawa – from jam-packed training sessions to a meaningful reception and formal meetings. To read the blog post, visit bit.ly/3L72uwP.

Staying informed matters. It can be hard to make sense of ALS clinical trial press releases, which are often written for investors and may reflect early or incomplete findings. Taking time to understand them in context is important. Our Clinical Research & Trials Update breaks down the latest ALS trial news, upcoming studies, and key clinical publications to help you better understand what it all means. 🩺 Dive in now: bit.ly/3RprjY5. 💬 Have questions? Join our Research & Clinical Trials 101 Q&A Drop-In, found under our webinars page.

Call for applications | The 2026 ALS Canada-@BrainCanada Discovery Grant Program invests in innovative research focused on identifying causes of or treatments for #ALS & improving the quality of life for people living with ALS. Apply by July 3 at 1:00 pm ET: bit.ly/4ugHPYJ.

Join ALS Canada for “Caring Through Grief: A Webinar for ALS Caregivers”. 💜 On Tuesday, May 19, at 6:30 p.m. ET, hear from Andrea Warnick of AWC Grief Support and ALS Canada as this supportive webinar explores the unique grief experience of ALS caregivers, including common myths, well‑intended but unhelpful advice, and how to respond. The session will share practical strategies for navigating sorrow, guilt, and complex emotions while finding moments of connection and meaning. 🔗 To register for free today, visit bit.ly/4w0LGdQ.

⏱️ There's still time to take advantage of the opportunity to DOUBLE your donation - but only until tonight! Thanks to Team Floyd from Toronto, until 11:59 p.m. ET tonight, all donations made online to the ALS Canada #WalkToEndALS will be matched up to $5,000. Double your impact in honour of a loved one. To make your donation today, visit bit.ly/4tQyTcE.

Curious about the clinical trial landscape for ALS? 🔬 On Friday, May 15, at 12:00 p.m. ET, tune into ALS Clinical Trials Unboxed to learn about ongoing ALS clinical trials in Canada and globally for people living with ALS. In this webinar, Dr. Angela Genge, MD, FRCP, Director of the ALS Centre of Excellence for Research and Patient Care in Montreal, will provide a review of the currently enrolling clinical trial PREVAiLS, a Phase 3 study on Pridopidine for the Treatment of ALS. 🔗 To register for this free webinar, visit bit.ly/48F0Knx. Participants are encouraged to submit their questions in advance.

📣 Last call! Share your experience navigating the financial realities of ALS in Canada to help us paint an accurate picture of the Cost of ALS into the current landscape. Your voice matters. Your experience matters. Join us in building the evidence needed to drive meaningful change. Don’t wait, the survey closes this Friday, May 8! The survey is completely anonymous, confidential, and takes only 10–20 minutes. Take the survey today: legeropinion.co/2026-Cost-of-A…

We are pleased to welcome Kyle Thompson to the ALS Canada Board of Directors. Kyle is no stranger to ALS Canada or the ALS community, serving on the Finance and Audit Committee for the past two years and hosting fundraisers. ALS Canada is grateful for Kyle’s continued commitment and looks forward to the perspective and leadership he will bring to the Board. Please join us in welcoming him! 🔗 To read more, visit bit.ly/4cUCdMl.

Nous sommes heureux d'accueillir Kyle Thompson au sein du conseil d'administration d'ALS Canada. Kyle n'est pas un inconnu pour ALS Canada ni pour la communauté de la SLA, puisqu'il a siégé au comité des finances et de l'audit et organisé des collectes de fonds au cours des deux dernières années. ALS Canada lui est reconnaissante de son engagement sans faille et se réjouit de la vision et du leadership qu'il apportera au conseil d'administration. Rejoignez-nous pour lui souhaiter la bienvenue ! 🔗 Pour en savoir plus : bit.ly/4cUCdMl.

A diagnosis of ALS brings many layers of loss – both immediate and unfolding over time. 💻 On Thursday, May 14, at 2:30 p.m. ET, join grief therapist Andrea Warnick and ALS Canada for “Living and Loving with Loss: A Webinar on Navigating Grief While Living with ALS”. This compassionate webinar explores the unique experience of grief while living with ALS, addressing common myths, emotional challenges, and practical ways to find connection and meaning along the way. 🔗 To register for free, visit bit.ly/4tIDxsQ.

With admiration and gratitude, we acknowledge the incredible contributions of our ALS Canada Board members, Richard Ellis, Lisa Flaifel, and Dr. Angela Genge, whose terms have come to an end. Each has contributed their time, expertise, and lived perspective to help guide the organization during a period of important growth – we thank them for their dedication, generosity, and commitment. 🔗 To read more, visit bit.ly/4w5Tmvc.

C'est avec admiration et gratitude que nous rendons hommage à l'incroyable contribution des membres du conseil d'administration d'ALS Canada, Richard Ellis, Lisa Flaifel et la Dre Angela Genge, dont le mandat est arrivé à son terme. Chacun d'entre eux a mis à disposition son temps, son expertise et son expérience personnelle pour aider à guider l'organisation au cours d'une période de croissance importante – nous les remercions pour leur dévouement, leur générosité et leur engagement. 🔗 Pour en savoir plus: bit.ly/4w5Tmvc.

From untangling the biology of TDP‑43, to uncovering new ALS risk genes, exploring the gut–brain connection, and highlighting Canadian‑led projects we’ve supported, our latest Fundamental Research Update takes a dive into what’s happening in ALS labs right now. These early discoveries are helping us better understand ALS and shaping the future of potential therapies. 🔬 Read the full update: bit.ly/4eTwGrZ.

Exciting news 💥Your donation to the 2026 ALS Canada #WalkToEndALS will be matched—dollar for dollar—until Friday, May 8 at 11:59 p.m. ET! For the next five days, thanks to Team Floyd, all donations made online to the ALS Canada #WalkToEndALS will be matched up to $5,000. This is your chance to DOUBLE your impact and join us in creating #aWorldFreeOfALS. Donate today, visit bit.ly/4tQyTcE.

Throughout May, we recognize #LeaveALegacyMonth. 💜 Legacy giving is a way to honour a cause near to your heart by leaving a donation in your will – an opportunity to make an ongoing difference to the ALS community. This #LeaveALegacyMonth, learn more about becoming an ALS Canada Legacy Donor: bit.ly/4tM2Muy.

From Ottawa to Toronto to Thunder Bay, the ALS Canada #WalkToEndALS takes place across Ontario at 22 locations and virtually! 💜 A friendly reminder: our in-person Walk events will be cashless. Make sure to bring your credit and debit cards, or mail in your cash and cheques ahead of time.🔗 To register and start fundraising today, visit bit.ly/48n4zxt.

Bringing you Monday motivation to hit your ALS Canada #WalkToEndALS fundraising goals! 💪 As you reach new heights fundraising for the #WalkToEndALS, celebrate your milestones with awesome rewards that help you to show your support for Canadians living with and affected by ALS and efforts in working toward #aWorldFreeOfALS. For more information on the rewards or to register, visit bit.ly/48n4zxt.

“Considering myself to have been fortunate in life, volunteering is a way to both pay back and pay forward. Volunteering gives me a sense of self fulfillment, a chance to learn new things, and you meet the nicest people who are both like-minded and generous. Volunteers leverage and multiply the benefits that the organizations they serve can deliver to society and community.” This National Volunteer Week, hear from some of the incredible volunteers who strengthen our community and ignite change toward #aWorldFreeOfALS. Today, we highlight Harry Joosten, a director on the ALS Canada Board. Harry was also diagnosed with ALS in 2025. Thank you, we are grateful for your contributions to our organization and the ALS community! 💜

Thank you to Shionogi Canada Inc., Elite Sponsor of the 2026 ALS Advance: National Meetings. With your support, ALS Advance aims to advance research, care, and knowledge exchange across Canada and globally through collaborative learning, candid dialogue, and shared problem-solving. We are grateful for your support in the success of these meetings!

“I volunteer with ALS Canada in memory of my mom, who passed away from ALS in 2017. This experience means the world to me because it is a way to remain connected with the ALS community, share stories about our loved ones, and contribute to a world free of ALS. Volunteers are essential for fundraising and awareness activities that support research for a cure for ALS and essential services for ALS patients. Volunteers also play a large role in uplifting the ALS community and helping to inspire hope, through events like the Walk to End ALS.” This National Volunteer Week, hear from some of the incredible volunteers who strengthen our community and ignite change toward #aWorldFreeOfALS. Today, we highlight Mahek Kaur, a member of the Walk to End ALS Volunteer Committee. Thank you, we are grateful for your contributions to our organization and the ALS community! 💜

This week, April 24-26, ALS Canada is proud to host the inaugural ALS Advance: National Meetings. This coordinated series of meetings focuses on the exchange of information to accelerate progress toward #aWorldFreeOfALS, and brings together researchers, clinicians, early‑career talent, health care professionals, and community members. We would like to thank the sponsors of ALS Advance, ALS Disrupt, and ALS Exchange for their support and generosity – fostering knowledge sharing and collaborative discussion. Thank you to Shionogi Canada Inc., @biogen, @PrileniaTx, Stiris Research Inc., Synchron, and @TraceNeuro for helping us make this happen!