Mamadosewin (meeting place, walking together)

Amyotrophic Lateral Sclerosis

Amyotrophic Lateral Sclerosis

Amyotrophic Lateral Sclerosis

Amyotrophic Lateral Sclerosis

Published on 31 May 2017 Hansard and Statements by Senator Jim Munson

Hon. Jim Munson:

Honourable senator, anyone who has had a loved one or a family member diagnosed with ALS knows how devastating this disease is. Today, I would like to bring your attention to this disease in honour of ALS Awareness Month.

This June, we can all do our part to spread awareness and support the work being done to find effective treatments for ALS. ALS, also known as Lou Gehrig’s disease, affects approximately 3,000 Canadians. It is debilitating and is the most common cause of neurological death in Canada. Some cases are quicker than others, but, for now, ALS is a rapidly progressive and incurable disease.

Those who are affected by the disease progressively lose their ability to control their own body. Motor nerve cells die and voluntary muscles degenerate. They lose their ability to speak, move and even breathe. Eighty per cent of those affected will pass away within five years of diagnosis. Some people die within a few months.

This is rather emotional for me today. In our parliamentary community, we are all personally affected by ALS. We have had the privilege of knowing the late MP Mauril Bélanger, a good friend, and witnessing his courage in the face of this disease. Despite being very sick towards the end of his life, Mauril Bélanger still served Canadians as long as he was able. He continued to serve. He demonstrated admirable dedication to his office and incomparable strength. The sad reality is that the diagnosis of ALS today is a fatal diagnosis. However, this does not have to be the case for the future, for our children and our grandchildren.

ALS researchers have had recent breakthroughs and continue to make significant progress toward developing effective treatments for this disease. Just this month, the first ALS drug was approved in the United States by the FDA. The exciting developments in ALS research include utilizing genetic testing, stem cell technology, biological signatures, clinical monitoring, machine learning and other technologies to understand the nature of this disease and develop treatments. With greater funding and resources, effective ALS treatments for Canadians are in sight.

Today, in the House of Commons, MP David Tilson and others are speaking to recognize ALS Awareness Month. David Tilson’s private member’s bill, Bill C-205, known as ALS Month Act, if passed, would officially recognize the month of June as national ALS month. I am wearing the symbol of ALS. It’s a cornflower. The cornflower is a symbol of hope for the ALS community. Despite its fragile appearance, a cornflower is resilient and long-lasting and grows in most locations in this country.

I hope you will join me in wearing this symbol, honourable senators. There are more cornflowers in the Senate, in the Reading Room. We have many of these cornflowers that you could wear throughout the month of June and support the ALS community.

I encourage you, honourable senators, to do something this month to support finding a cure for this disease. Also, you can refer to the ALS Society of Canada to learn more about the work. I encourage you to do what you can this month to help the people living with ALS today and in the future. Thank you, honourable senators.