My oldest son was challenged and took an ice bucket for the cause. He made this note about the experience:
Terrifying disease if you look into it. This awareness campaign is rather brilliant, but I hope significant amounts of the money raised goes to research, rather than campaigns and admin fees.
- 29% research – grants (21%), program support ”“ national ALS Canada Research Conference, travel grants for ALS researchers, etc. (8%)
- 21% client services
- 6% public awareness
- 4% federation ”“ national support
- 4% volunteer program development
- Admin (9%)
- Governance (2%)
- Fundraising (25%)
Fundraising costs are on the high side however the work that they do in Ontario makes a difference to those families impacted by ALS. Like many people, I wasn’t too familiar with the disease prior to the ice bucket challenge.
Here is an overview from the ALS Canada website:
Amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease) is a fatal neurodegenerative disease. People living with the disease become progressively paralyzed due to degeneration of the upper and lower motor neurons in the brain and spinal cord. Eighty per cent of people with ALS die within two to five years of diagnosis”“ unable to breathe or swallow. Ten per cent of those affected may live for 10 years or longer.
Other neurodegenerative diseases include Alzheimer’s disease, Huntington’s disease and Parkinson’s disease. According to the World Health Organization, neurodegenerative diseases are predicted to surpass cancer as the second leading cause of death in Canada by 2040.
ALS has no known cure or effective treatment yet. For every person diagnosed with ALS, a person living with ALS dies. Approximately 2,500 – 3,000 Canadians currently live with this fatal disease.
Yesterday, I learned about the death of a good friend. A person that I have known for about 25 years. He was younger than me, early fifties, with a wife and children. He was a wonderful man, very successful in life and business. And he died from this awful disease.
I haven’t been challenged to do the ice bucket. And it really doesn’t matter. Today I gave to ALS Canada to remember my friend and to try to make a difference to the people in my province that are being impacted by this disease. You can do so here.