Madam Speaker, I want to start off my comments today by thanking not only the member for Humber River—Black Creek for bringing this issue forward but also my colleague from Dufferin—Caledon for raising awareness.
This is a devastating disease, affecting approximately 2,500 to 3,000 Canadians over the age of 18 who are currently living with ALS, and more than 200,000 individuals worldwide. These individuals experience a loss of mobility, a decline in breathing, difficulty eating and drinking, and slurred speech or sometimes even the complete loss of speech. While some suffering with this incurable disease may live longer than others, ALS is usually fatal within two to five years after diagnosis.
There is still so much work and research to be done to help reverse this disease. Ultimately, what we would all like to see is that a cure is found. I think I speak for most people when I say that the ALS ice bucket challenge in 2014 played a massive role in raising awareness about the disease. As a chiropractor, my first experience with ALS was in the early 1990s. I served with a friend at the St. Mary's Knights of Columbus. We shared an Irish background, so we had some good fellowship over the years. He married late in life, so he had a young family and a wife. When I heard about his being diagnosed with ALS, it really brought it home. We hear about Lou Gehrig's disease, but to see it first hand, and personally see how fast, how real, and how devastating the condition is, and the real effect it has on family and community, really brings it home.
Public awareness from the ice bucket challenge campaign went viral on social media, with celebrities, athletes, politicians, and all of our friends and neighbours taking part. I bring this up because prior to the 2014 ALS ice bucket challenge, the awareness of ALS really was quite limited. Those who did know about the disease referred to it as Lou Gehrig's disease, named after the famous New York Yankees player who came out publicly with his battle in 1939. The importance of raising awareness through social media proved effective because, following the ice bucket challenge, the ALS Association raised an additional $100 million, and the ALS Society of Canada raised an additional $26 million. This additional research funding has led to some extremely valuable research. As my colleague said, in the last five years it has been really accelerated. Recently, a third gene has been identified as a cause for the disease, which goes to show that, by raising public awareness and ensuring that funding is made available to researchers, progress can be made to find a cure.
In 2013, project MinE was initiated by two ALS patients. It is a research project that aims to map the full DNA profiles of approximately 15,000 individuals with ALS and 7,500 control subjects, with the hopes of identifying genes that are associated with ALS, ultimately leading to the development of a treatment. This large-scale genetic research is unprecedented and will require both public awareness and, of course, important funding. On January 10, 2017, Canada became the 17th country to join this research project.
The ALS Society of Canada is leading fundraising efforts and seeking to sequence up to 1,000 genomes, with four of Canada's leading ALS geneticists coming together in their first ever cross-country collaboration. Four other Canadian ALS clinics have also come together to collect and store blood samples being used for research, including the G.F. Strong Rehabilitation Centre's ALS centre in Vancouver, the Sunnybrook Health Sciences Centre ALS clinic in Toronto, the ALS program at the Montreal Neurological Institute and Hospital, and the ALS clinic at the CHU de Québec.
As of today, 7% of Canada's goal has been reached. While 62 DNA profiles are good for a month's work, it is vital that this important research initiative be discussed publicly so that more people, especially Canadians, can participate or donate. As for the status of the project as a whole, 7,963 DNA profiles have been collected so far, with the goal of collecting 22,500 DNA profiles.
There is still a lot of work to be done. However, as we can all see, countries around the world are coming together to find a cure.
I am happy to support Motion No. 105. I believe that we should be using our resources to help advance research for diseases such as ALS.
Our Conservative Party has always been a strong advocate for neurological research, and we have always supported the need for more ALS research. In 2011, Brain Canada was created, with the previous Conservative government investing $100 million over seven years. This includes $10 million to the ALS Society of Canada through Brain Canada to stimulate research relevant to ALS. I was so happy to see the Minister of Finance invest up to $20 million in additional matching funds to Brain Canada in budget 2016. I hope that it will continue to be a national non-profit organization that the government invests in.
We parliamentarians saw how rapidly this disease can progress. Our colleague, the late member for Ottawa—Vanier, was diagnosed with ALS in November 2015. We saw his courage. We saw him try to persevere and remain in the House of Commons as much as he could to represent his constituents. We saw him live out a day as Speaker of the House, a moment which I think brought us all closer. We saw this awful disease rapidly take over his body and his speech. I do not think there is a member in the House who would not agree that action needs to be taken to ensure that a cure for ALS is found.
There is hope. Living with ALS should not be the end. We know that progress has been made and is still being made every single day.
There are 400,000 people around the world who are affected by the disease, with more than 100,000 dying every single year. We need to understand that while millions have been raised for ALS, portions of these funds are allocated to help patients and their families who typically spend hundreds of thousands of dollars to care for a loved one, and this is a struggle for families. ALS Canada's provincial chapters use a portion of donations to help these families access care in their community and provide specialized equipment to ALS patients.
We must all remember that ALS does not just affect the individuals, but it affects the families and friends as well. There is nothing worse than watching a person one loves and cares about progressively get weaker, lose his or her speech, and eventually become immobilized.
Unfortunately, unlike many other diseases, there is no survivorship. There are currently no anniversaries to celebrate the day that an individual beats ALS. As Dr. Lorne Zinman, a neurologist who is the head of the ALS clinic at Sunnybrook Health Sciences Centre in Toronto, stated:
...there are so many smart people working on this disease now and it has the necessary attention, and all the community is really excited about a breakthrough in the hopefully not too distant future.
The day for a cure is not an impossible expectation. We have seen breakthroughs with HIV/AIDS, cancer, and many other once-fatal diseases. These diseases have become manageable thanks to research, commitment, and government investment. I believe that researchers are on the right path. If we as a country continue to support projects, such as project MinE, and continue to support our researchers, I believe that ALS will be a disease of the past.