The is the only charitable organization supporting those living with and affected by ALS in the province.
Executive Director, Leslie Ring Adams says, “Our mission is to make each day the best day possible for those living with and affected by ALS. Our support services and programs are provided free of charge, thanks to contributions from donors and the community. Further, we play a leadership role in generating funds for the most promising ALS research in Alberta. All the funds raised stay in Alberta.”
(ALS), also known as Lou Gehrig's disease, is a progressive neurodegenerative disorder that affects nerve cells in the brain and spinal cord. It primarily involves the degeneration of motor neurons, which are nerve cells responsible for controlling voluntary muscle movements. The gradual loss of motor neurons leads to muscle weakness, twitching, and eventually paralysis.
Currently, there is no cure for ALS. Treatment focuses on managing symptoms, maintaining quality of life, and providing supportive care. The combination of care and ongoing research empowers individuals daily.
What is it like living with ALS? Jenna Doll, a young mother from Wainwright, shares her story.
“I first looked for help when I was unable to do up the snaps on my newborn son’s sleeper. My hands were losing strength and fine motor ability. I sought medical help from my primary doctor, who referred me to a neurologist, who admitted me into the U of A. I saw four neurologists in the course of four days. Suddenly, here I am at 31 with a loving husband, a 2-year old, and a 6-month old and I’m all alone in the U of A [this was during the pandemic] being told I have a terminal illness with a short expiry date. My fight or flight kicked in and I wanted to wrap up my loved ones and flee. We packed up and went to the lake to absorb the devastating news. Two weeks later it was time to meet the team at the multi clinic and start our ALS journey. That day, June 19, 2020, was the hardest day of my life.”
Doll adapted and found humor in her situation.
“I am a mother and a wife, and I like to knit... just kidding! You need hands for that! I started tattooing my arm. I proudly salute ALS on my middle finger every day! My family comes first and so we all just keep going. I am still Jenna – wife, mother, and badass. I have a young family that needs me. I run my household every day by being present, planning, scheduling, and making sure my kids have a normal upbringing.”
Doll leans into the support that is available to her and her family.
“I have the best team on earth. We have gone the route of self-managed home care, which allows me to remain home until the bitter end. With this program, I have hired my own care team who love me and care for my best interests. We are supported by the ALS Society with their equipment loan program, as well as a support group for me and my caregivers. My community continues to support me every day with their generosity.”
She continues, noting about the ALS Society, “We are blessed with the ALS Society of Alberta and their Support for Champions program. It helps off-set some of the fees for Veda and Ramsey’s activities like swimming, skating, gymnastics, and soccer. Programs like this help to make their activities possible. We access the equipment loan program as well. Over the years they have provided me with wheelchairs, walkers, a porch lift, a Hoyer lift, and much more. The ALS Society makes living at home possible. I have been the Wainwright Walk Together for ALS Ambassador for the last three years, and through those efforts we have raised nearly $50,000 for the ALS Society.”
What are Doll’s plans for the future?
“I just live each day as it comes,” she says.
Research continues to help those living with ALS, and the ALS Society of Alberta remains a committed partner to help people like Doll experience their best days regardless of how the disease progresses.
There are 4 Walk Together For ALS events left this year: June 15 in Red Deer, September 7 in Lethbridge, September 8 in Hinton, and September 15 in Wainwright. Register today or donate at alsab.ca/walktogetherforals and help support Jenna and other Albertans living with ALS.
Learn more about the ALS Society of Alberta and the Walk Together for ALS and on , , and @alsalberta. by making a donation that goes towards the support of Albertans living with ALS. Every donation goes towards fulfilling the Society's mission, by providing the best possible support for those living with ALS in Alberta through the equipment loan program, support groups, home visits, referrals and support for children.
