Amyotrophic Lateral Sclerosis and the ALS Society of BC

Today was my turn to read a member’s statement in the house. I took the opportunity to highlight the impressive work being done by the ALS Society of B.C. to promote ALS awareness, treatment and research.

There are somewhere between 2500 and 3000 Canadians presently afflicted by ALS. More generally, ALS strikes about 2 per 100,000 people each year. My first experience with ALS was while I was a graduate student at Cambridge University. When leaving a class I literally stumbled into and then onto Stephen Hawking who was being brought in to give a lecture by one of his graduate students. The father of one of my son’s friends has ALS and the father of one my son’s teachers also had ALS.

My Statement

Amyotrophic Lateral Sclerosis or ALS is a debilitating, progressive neurological disease that leads to the death of neurons that control voluntary muscles. Each of us in this chamber probably knows of at least one person who has struggled with this disease. In my case, it’s three.

Honourable Speaker, 2014 was a very busy year for the ALS Society of B.C.

Prior to last year’s Ice Bucket Challenge (which I had the distinct honour of participating in), the society found it challenging to raise awareness about ALS. They found it challenging to attract the type of funding required to advance ALS research. These challenges were literally ‘washed away’ temporarily in August last year. And a new era of hope has begun.

Three years ago the Society established a five-year goal to raise an additional $2 million for ALS research.

Remarkably, by itself, the 2014 Ice Bucket Challenge raised nearly that amount through the generosity of British Columbians. And the ALS Society of B.C. directed 100% of this windfall to ALS research. As a result, five new research grants have already been awarded in Canada, including one to Dr. Charles Krieger at Simon Fraser University for his studies concerning the use of bone marrow cells to deliver single chain antibodies in ALS.

In British Columbia, we are extremely fortunate to have some of the best ALS specialists in the world caring for patients at the GF Strong Rehabilitation Centre. The Province’s continued partnership with the Centre is crucial to providing the best quality of care service.

On August 6^th, members of the International Alliance of ALS/ Motor Neurone Disease (MND) Associations will be staging events around the world to report back on how the funds from the Ice Bucket Challenge have been invested.

However, it is important to note that despite this recent fundraising success, ALS is still not a treatable disease. More patients are being diagnosed daily, and the cost of equipment and critical services increase every year. Until there is a cure, we cannot afford to let up.

Honourable speaker, June is ALS awareness month. There will be many events taking place across BC during this month. And if you’re looking for information, it can be found at the ALS BC website: www.alsbc.ca .

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