the facts about als
About ALS
WHAT IS ALS
Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s Disease) is a brutal progressive neuromuscular disease that affects nerve cells in the brain and spinal cord. ALS weakens motor neurons, which stop sending signals to muscles, which causes people to weaken over time. When voluntary muscle action is affected, people living with ALS will eventually lose the ability to speak, eat, move and breathe.
The symptoms with which ALS presents and the rate at which ALS manifests can vary greatly.
About 1,000 new cases of ALs in Canada are diagnosed every year.
The average life expectancy for a person diagnosed with ALS is 2-5 years.
There are about 3,000 – 4,000 people living with ALS in Canada in any given year. One of the biggest challenges is there are many more who are living with it but don’t yet know it.
Most people who develop ALS are between the ages of 40 and 70, but that can vary.
ALS is 20% more common in men than women. However, with increasing age, the incidence of ALS is more equal between men and women.
About 90% of ALS cases occur without any known genetic cause. The remaining 5-10% of ALS cases – familial ALS – are inherited through a mutated gene.
On average, when someone is diagnosed with ALS, a working age family can expect to incur costs averaging $150,000 – $250,000 – though that number can vary depending on the individual’s circumstances. For context, people with ALS have significantly higher mean annual costs than patients living with HIV/AIDS, stroke survivors during the first year after stroke, and Alzheimer’s disease.
There is no cure for ALS … yet. We can’t wait any longer. We believe that through collaboration, innovation, investment and accountability, a cure is possible. And we know that patient voices are essential to the solution.
Resources &
Education
ALS Action Canada is a non-medical organization. These are Member-sourced links listed for resource-sharing and information purposes only.
Organizations
Health
Information and Community
Watching and Reading
- Letters to ALS: Our Journeys to Hope, Various Authors
- Speaking ALS: An Anthology, Various Authors
- Stitching strength: What I have learned about hope in ALS, Dr. Richard Bedlack
- For Love and Life: No ordinary campaign, Brian Wallach (Available on Amazon Prime)
- The Song of the Cell, Siddhartha Mukherjee
- The Power of Prions, Michel Brahic
- A Beginners Guide to Dying, Simon Boas
Equipment
als voices must be heard
Storytelling is a powerful way to connect with others with shared experiences, especially in the ALS community. Stories can shine a light on the impacts of ALS, raise awareness about the disease, and help inspire and motivate others to drive change.
