|
Prairie to Peak - October 2025
ALS Society of Alberta
| | |
As we head into Fall, we're reflecting on the incredible strength of Alberta's ALS Community. From summer events and fundraisers to powerful stories of connection, your support continues to move research and care forward in meaningful ways.
This season, we're excited to build on that momentum with new opportunities to support our cause, including our Giving Tuesday: Fuel Discovery for ALS campaign and a special Stories of Strength evening with Kelsie Snow.
| |
Special Guest Speaker for Staying in Touch Support Group
We are honoured to welcome Lindsey Funk (BSW, MSW, RSW) as a special guest speaker for the Staying in Touch Support Group on November 27, 2025, from 1-3 pm.
Lindsey is a Registered Social Worker with a Master’s in Clinical Social Work, specializing in grief, loss, and trauma. She will lead a thoughtful conversation on coping with loss and nurturing emotional well-being after the passing of a loved one to ALS.
This virtual session is open exclusively to members of Alberta's ALS Community who have lost a loved one to ALS. For more information, please contact our Client Services team or email info@alsab.ca.
| | | |
Book Club for ALS Caregivers
Join former and current ALS caregivers for an ALS Society of Alberta Book Club to foster community and share common experiences. This book club will read Emma Heming Willis’ newly-released memoir, “The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path,” about life with her husband, actor Bruce Willis, after his frontotemporal dementia diagnosis.
This private discussion series invites current and former ALS caregivers to share stories of strength, resilience, and reflection. Registration is available only through ALS Alberta Client Services. Please send an email to info@alsab.ca or contact your CSC for registration information.
| | | |
| |
Giving Tuesday 2025: Fuel Discovery for ALS
This Giving Tuesday, the ALS Society of Alberta invites you to Fuel Discovery for ALS Research. This province-wide Giving Tuesday campaign will support groundbreaking ALS studies right here in Alberta.
Throughout November, we’ll share stories of courage, connection, and discovery, including an exclusive Stories of Strength evening with Kelsie Snow at cSPACE, a webinar featuring ALS researchers, and a Caregiver Book Club for current and former ALS caregivers.
Starting November 15, 2025, and for a limited time only, all donations will be matched (up to a maximum of $25,000) and directed to AARN projects like the Jennifer Prest Bulbar ALS Fund, thanks to a generous donor.
Together, we are advancing research and bringing hope for treatments and a cure closer than ever before.
www.alsab.ca/givingtuesday
| | | |
An Evening of Storytelling and Strength with Kelsie Snow
Join us for an inspiring evening with Kelsie Snow -- writer, advocate, primary caregiver, and wife of Calgary Flames Assistant General Manager Chris Snow, who lived with ALS with grace, courage, and humour until his passing in 2023.
In this special Giving Tuesday event, moderator and fellow storyteller Christina Frangou will lead a heartfelt conversation about love, loss, legacy, and the power of voice.
The evening will conclude with a Q&A session and research updates from the Alberta ALS Research Network.
| | | |
| |
Research Webinar: An Update on The Jennifer Prest Bulbar ALS Fund
Join us for an engaging research webinar hosted in partnership with the Alberta ALS Research Network (AARN).
Date: Nov 28, 2025 | Time: 11:00 am -12:00 p.m. MST | Free to attend
Dr. Yana Yunusova and her graduate students, along with Dr. Jewett will share insights from their latest research on speech and communication changes in ALS, highlighting innovations that help improve diagnosis, care, and quality of life.
The session will include a live Q&A, offering attendees the opportunity to ask questions and learn more about the impact of ongoing ALS research.
| | | | SUPPORTING ALBERTA'S ALS COMMUNITY | | |
Memory in Bloom Hoodie
Earlier this year, the ALS Society of Alberta, CAA, Ranger Creative, and Alberta Apparel collaborated with Frida and Mikael Backlund on an amazing, and stylish initiative to raise funds for the ALS Society of Alberta. As the year comes to a close - limited quantities still remain. Purchase your Memory in Bloom Hoodie in support of the ALS Society of Alberta for yourself, or as a wonderful holiday gift with deep meaning!
| | | | |
| |
Cruise for a Cause
Ready to book your next getaway and make a difference? Through Cruise for a Cause, a portion of every land or sea booking made with Expedia Cruises in Chestermere is donated to the ALS Society of Alberta.
Every vacation booked through this initiative helps support Albertans living with ALS through equipment, care, and connection.
Whether it’s your bucket list trip or a weekend escape, your travel can help make it possible.
| | | |
|
Betty’s Run for ALS and Walk Together for ALS are more than fundraising events - they are symbols of provincial unity, remembrance, and collective action.
Looking around at the thousands of individuals attending these events, everyone is here for the same reason. We are choosing to fight, to support Albertans living with and affected by ALS, and ultimately, find a cure. We are deeply grateful to every coordinator, sponsor, volunteer, and participant whose passion and leadership brought these events to life.
As we look ahead to 2026 and reflect on 30 years of Betty’s Run and Walk Together for ALS, we’re excited to announce that exciting changes are on the horizon! We’re preparing to reimagine Alberta’s signature ALS community event with a unified new name and look that celebrates three decades of courage, connection, and community across Alberta.
Reminder: If you have outstanding pledges or donations for any of these locations, please ensure you get your donation to us as soon as possible to be eligible for a 2025 charitable tax receipt.
| |
Looking Back on Summer 2025
The Alberta Walk Together and Betty's Run for ALS are the only Canadian fundraisers dedicated entirely to supporting Albertans living with and affected by ALS. And this year, your impact was extraordinary!
Across 10 communities (Altario, Calgary, Camrose, Cold Lake, Drayton Valley, Edmonton, Hinton, Lethbridge, Wainwright, and Red Deer) more than 2,750 participants came together in a powerful show of unity and raised an incredible $1,005,494.06!
| | | | |
This year, Albertans have once again stepped up in inspiring ways to raise awareness and vital funds through community-led initiatives. From garage sales to car shows to full-scale weekend concerts, our #ALSCommunity found creative and meaningful ways to truly make a difference in the lives of Albertans living with and affected by ALS.
Every hour spent, every penny raised, every email sent, goes a long way in supporting our community. Whether it’s as large as pledging to the most promising Albertan ALS research, or as small as donating adaptive cutlery which provides someone with independence and support - every action, big or small, has amazing ripple effects which make an immense positive difference to the lives of so many real Albertans. Thank you.
Want to plan your own event? We’d love to support you! Get started by completing this form or reaching out to us directly.
| |
| |
Quonset Days
Labelled “The Greatest Outdoor Party on Dirt”, Quonset Days started as a tribute to a loving father and husband, Peter Biemans, who passed away in 2009 - and quickly turned into one of Alberta’s largest rural concerts, all in support of Albertans living with and affected by ALS. This year presented a large milestone for Quonset Days, surpassing $1,000,000 raised since 2010!
| | | |
Exshaw Legion Car Show
The Exshaw Legion Car show was a fun-filled afternoon in the heart of the Rockies showcasing vintage classics to custom builds in support of the ALS Society of Alberta. Thank you to Ed and the Exshaw Legion for your support.
| |  |
Memorial Garage Sale for ALS
Every year, Marian and her family organize a special activity to raise funds in support of people living with ALS. In memory of her husband, with family and friends of Deacon Hyland Fraser - they hosted a garage sale fundraiser. Thank you!
| | |
Strings for a Cause
Since 2021, Strings for a Cause has played a vital role in helping us support Albertans living with ALS by selling handmade bracelets to raise funds and awareness. With a different theme each year, this year’s Warrior Collection featured three Northern Lights-inspired bracelets, each representing the strength and spirit of those affected by ALS. A special thank you to the Sousa family, for their ongoing support of Alberta’s ALS community!
| | | |
Tri'ing To End ALS
Donna and husband Mike are “Tri’ing to End ALS” by competing in triathlons in each of the 10 provinces and 3 territories to raise awareness and funds for ALS. Supporting ALS Societies across Canada, the funds raised were divided 50% to patient services in the province or territory it was donated and the rest to PROJECT HOPE. With 18 triathlons and over 31,000km of driving over 4.5 months - this feat proudly raised over $40,000. Thank you!
| | |
Nifty FIfty Car Show
Hosted by Rocky Ridge Retirement Community in support of the ALS Society of Alberta, the Nifty Fifty Car Show was an exciting afternoon featuring classic vehicles, bringing a touch of nostalgia and community spirit to a lively event! This 3-hour event brought smiles and joy to attendees and residents, and raised over $3,000 in support of Albertans living with and affected by ALS. Thank you!
| | |
Cycle for ALS
Cycle for ALS returned for its third year, showing off the stunning views of the Albertan Rockies. Participants cycled through one of three scenic routes, starting in Banff.
Thanks to a tremendously supportive crowd this year, the event raised over $24,000! Thank you!
| | | |
EB Horsman Golf Days
EB Horsman Electric was proud to turn their 3-day customer golf outing into something bigger: real help for Albertans living with ALS. All funds raised support the ALS Society of Alberta’s most pressing programs and services - raising an astonishing $5,100! Thank you!
| | |
Sunday Brunch for Mark
Friends and family gathered at the beautiful Bow Valley Ranche Restaurant for a heartfelt brunch in loving memory of Mark, one year after his passing from ALS. The special event was an opportunity to honour his life, share memories, and come together in support of our cause. Thank you!
| | |
Climbing for Change
Climbing for Change is the first ever “Everesting”-style event of its kind - pushing physical limits for social change. Three teams climbed the equivalent of Mount Everest, 29,035 feet of elevation, 134 laps of Rabbit Hill in Edmonton. Three teams took this challenge in support of the ALS Society of Alberta, raising a total of $11,438.34! Thank you to all three teams who supported the ALS Society of Alberta: Team Like A Boss, Climb & Punishment, and Summit Junkies! A very special congratulations to Team Like A Boss for winning the Sherpa Spirit Award for outstanding spirit leading up to, and throughout the event, and more than doubling their fundraising goal! Thank you!
| | | |
Stampeders Event with Glenn Love
Glen Love, former Calgary Stampeder and Grey Cup Champion, recently diagnosed with ALS, decided to fight and create the Love Life ALS Foundation. This event hosted by the Calgary Stampeders, invited families in the #ALSCommunity to attend the Calgary Stampeders game on September 19, as they honoured Glenn for his incredible career and remarkable mission to improve the lives of those living with ALS. Thank you!
| | |
Ultima Dental Support
A heartfelt THANK YOU to Ultima Dental Clinic for their incredible generosity. In memory of Gloria Louie, the clinic opened its doors on one of their days off - donating all proceeds from that day to support the ALS Society of Alberta. Their efforts raised over $7,400, a true reflection of their outstanding compassion, teamwork, and community spirit. Thank you!
| | |
Howard Smith Memorial Team Roping
For its 24th year, the Howard Smith Memorial Team Roping event continued to bring Albertans together in support of the ALS community. Organized by a multigenerational committee of family and friends, this cowboy classic with a modern-day twist is a cherished tradition in Eagle Valley. The day was filled with family fun, a complimentary BBQ, prizes, and even a kid roping competition, reminding everyone that the spirit of giving (and a good roping arm) can run in the family.
This year’s event raised over $20,000, bringing the total raised since its inception in 2002 to well over $100,000 in honour of Howard Smith, who lived with ALS for 11 years. Congratulations for reaching this impressive milestone! We are so grateful for your support of Alberta's ALS community.
| | | | VOLUNTEER THANK YOU & NEW OPPORTUNITY | | |
Thank You to our
Incredible Volunteers!
A huge and heartfelt THANK YOU to all of our Edmonton Casino volunteers. It takes truly exceptional and kind-hearted individuals to dedicate this time and energy to support an organization.
You are an integral part of supporting Albertans living with and affected by ALS. Casino fundraisers are one of our most impactful events of the year, raising an average of $75,000 - $85,000 in support of the ALS Society of Alberta.
These vital funds provide equipment, support, and comfort to Albertans living with ALS and their loved ones, but we cannot do it without you. With 36 shifts on average per casino, one volunteer’s time can be the equivalent of more than $2,000 for one shift - in some cases that is over $200 per hour - but your support is worth so much more.
| | |
Upcoming Volunteer Opportunity
On Dec 2, 2025, the Edmonton Oilers play against the Minnesota Wild at Rogers Place, with the 50/50 raffle hosted by ALS Action Canada and proceeds benefiting the ALS Society of Alberta.
We are seeking enthusiastic volunteers to help sell 50/50 raffle tickets during the Oilers game. Your involvement not only contributes to vital research and support for Albertans living with and affected by ALS but also helps raise awareness about this important cause.
Details:
- Tuesday, December 2, 2025
- Time: Shift starts at 4:30 pm
- Location: Rogers Place
| | | AARN - ALBERTA ALS RESEARCH NETWORK | | |
What is AARN?
The Alberta ALS Research Network (AARN) is a pioneering initiative aimed at uniting top-tier researchers from the University of Alberta and the University of Calgary to accelerate the search for effective treatments and ultimately a cure for ALS.
This initiative, made possible through the generous donations from Alberta's ALS community, represents a significant investment of $1.1 million over two years into innovative ALS research right here in Alberta.
| | |
AARN Fund Matching Awards
The Alberta ALS Research Network (AARN) is proud to announce an open call to support fund-matching awards. AARN Fund Matching Awards will support ALS researchers in Alberta applying for large-scale grants that require the researcher to raise funds that the awarding institution will then match.
| | | |
The Time Is Now: Canadian Collaboration to End ALS
This October, the ALS Society of Alberta joined advocates, researchers and clinicians on Parliament Hill for the national gathering: The Canadian Collaboration to End ALS. Together, they called for a bold federal commitment: $50 million for ALS research.
Alberta is right at the heart of this effort, with major initiatives such as CAPTURE ALS and the Canadian Neuromuscular Disease Registry (CNDR) expanding across the country under the banner of the Alberta ALS Research Network (AARN).
Join us as we stand united, turning momentum into measurable progress for people living with ALS.
| | | |
Ensuring Fair Access for Albertans Living with ALS
At the ALS Society of Alberta, we recognize that COVID-19 vaccination is a personal choice. We aim to make sure that those who choose to be vaccinated have the information and access that they need.
This update highlights our ongoing efforts to work with health authorities and care teams to remove barriers, share accurate information, and support people living with ALS and their families in making the decisions that feel right for them.
| | | TREATMENTS, RESEARCH, AND CLINICAL TRIALS | | |
Treatments
In March 2025 Health Canada approved QALSODY (Tofersen) for the treatment of SOD1 ALS under a Notice of Compliance with Conditions (NOC/c). The medication is available to eligible individuals through Health Canada's Special Access Program (SAP). QALSODY is the first therapy indicated in Canada to target a genetic cause of ALS.
QALSODY becomes one of just three Health Canada approved ALS treatment options in the country along with Radicava Oral Suspension and Rilutek.
|
Clinical Trials in Alberta
Exciting research is underway across Alberta and beyond, with several clinical trials actively exploring new treatment options for ALS. These studies represent hope.
Each one brings us closer to better understanding, managing, and ultimately ending this disease.
Below is a snapshot of currently active trials, including those recruiting participants and those already in progress.
Whether you're a person living with ALS, a caregiver, or someone passionate about advancing research, staying informed helps us all move forward together.
| | |
The ASTRALS study is testing a new drug called VHB937 to see if it can slow the progression of early-stage ALS.
This Phase II clinical trial includes people who developed ALS symptoms within the past two years.
Participants are randomly assigned to receive either VHB937 or a placebo for 40 weeks, followed by an open-label phase where everyone can take the study drug. Researchers will look at:
- How long before participants need permanent breathing support.
- How daily function changes over time, using the ALS Functional Rating Scale-Revised (ALSFRS-R).
- What side effects occur and how safe the treatment is overall.
| | | |
CAPTURE ALS is a long-term research project collecting health data, brain imaging, and biological samples to create a detailed biological picture of ALS.
People living with ALS, related conditions, and healthy volunteers will visit research sites several times over a year. During visits, participants may:
- Complete neurological and speech assessments and ALS-specific questionnaires.
- Undergo MRI scans.
- Provide blood, saliva, and optional spinal-fluid samples.
- Working with other national and international ALS initiatives, to openly share data to contribute to the global effort to find a cure.
| | | |
Novel MRI Biomarkers for ALS Progression
This research study is developing new MRI-based tools to measure how ALS affects the brain over time.
While a standard MRI often looks normal in ALS, advanced MRI techniques can detect subtle changes in brain structure, wiring, and chemistry, helping researchers identify reliable biomarkers of progression of diseases like ALS.
Each participant will have three MRI scans over eight months, along with neurological and memory tests.
These scans may help doctors track ALS more accurately in the future and speed up how new treatments are tested.
| | | |
LUMINA: Testing the Safety of AMX0114 for ALS
The LUMINA study is evaluating how safe and tolerable a new drug called AMX0114 is for adults living with ALS.
AMX0114 is given through an injection into the spinal fluid (a lumbar puncture). Researchers will monitor for any side effects, including serious or dose-related reactions, and track participants’ overall health through lab tests, vital signs, neurological exams, and ECGs.
The study will also look for biological markers in blood and spinal fluid (signs of nerve damage or inflammation) to see how AMX0114 may affect the disease process. This is an early-phase trial designed to ensure the treatment is safe before moving to larger studies.
| | | |
ALN-SOD: A First-in-Human Study for People with SOD1-Related ALS
The ALN-SOD study is the first human trial testing an experimental drug designed for people with a genetic form of ALS caused by a change in the SOD1 gene (known as SOD1-ALS). Researchers aim to learn:
- How safe and tolerable the drug is.
- How much of it appears in the blood and spinal fluid.
- Whether the body develops antibodies against it.
- What effects it may have on biological markers and ALS symptoms.
The study will help determine safe dosing and how the drug behaves in the body before larger studies are conducted.
| | | | | |
