Amyotrophic Lateral SclerosisPublished on 8 December 2016 Hansard and Statements by Senator Jim Munson
Hon. Jim Munson:
Honourable senators, today I would like to speak about an issue that hits close to home. Earlier this year we lost our honourable colleague Mauril Bélanger. I can remember the day Mauril walked into my office, which is exactly a year ago, and told me his news; we cried a lot. He told me about having ALS, a neurodegenerative disease that causes nerve cells regulating muscle control to die. I remember that moment in my office he told me and we cried and cried and cried.
Mauril was not alone in his struggle against this frightening illness. There are currently 3,000 Canadians afflicted by ALS with 1,000 new cases being diagnosed annually. The condition is invariably fatal, and sadly 1,000 Canadians die from the disease every year.
Because ALS causes a progressive loss of movement, speech and respiratory function, there is a tremendous financial burden associated with the condition. Individuals and families living with ALS face difficult decisions about housing, whether to renovate or move knowing that most people succumb to the disease in just two to five years.
However, there is hope, honourable senators. I’m sure you will remember the Ice Bucket Challenge in the past few years. It raised much awareness and nearly $20 million for the cause. While donations were matched by Brain Canada with support from the federal Department of Health, the Canadian government’s funding of ALS research remains otherwise limited, just $1.5 million to $2 million per year.
Inspired by Mauril’s strength and determination, a group of parliamentarians formed the ALS caucus earlier this year. We want to continue building momentum and take up ALS Canada’s challenge to make the condition treatable by 2024, a goal that can only be accomplished with greater investment in research.
To that end, the ALS caucus has drafted a letter to the Minister of Finance calling on the government to commit $25 million over five years to the ALS Canada Research Program and make a one-time investment of $10 million to permit the 3,000 Canadians living with ALS to voluntarily contribute samples of their DNA to Project MinE. The initiative will map the complete genetic profiles of 15,000 people with ALS and 7,500 control subjects worldwide.
Honourable senators, in closing, I will always remember when Mauril served as Honorary Speaker and walked down the Hall of Honour surrounded by applauding colleagues. We recognized his bravery and perseverance that day. Now it is time to honour it.
Honourable senators, please join me in calling on the government to support research by signing the ALS caucus letter to the Minister of Finance, which I have with me. We would appreciate it very much if you put your signature on this document. It would be a beautiful, wonderful Christmas thing to do.