Mr. Speaker, I am pleased to speak about amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig’ disease. I would also like to thank the sponsor of this motion, which I will support.
This issue is particularly important to me, because today the daily fight by ALS sufferers and their families needs a high profile, constant engagement, and unwavering political support. As we will surely recall, in 2014, the fight against ALS attracted major visibility through the ice bucket challenge. It gave real hope to those with the disease, their families, caregivers, and researchers. Many media personalities agreed to get involved, and $16 million was raised in Canada.
This vitally important issue resurfaced in fall 2015, when our colleague, the Hon. Mauril Bélanger, informed us that he had been diagnosed with ALS and that there was no cure. I became acutely aware of this disease over the few months that I witnessed what Mauril Bélanger was going through before his death. What was happening to my colleague made me realize the difficulties caused by this disease, and just how important it is to stand with ALS sufferers and their loved ones.
Anyone can get ALS. People living with this disease become paralysed gradually. They therefore require material as well as psychological support. It is our duty to make sure they have it. Although people may be physically affected, their intellectual faculties remain in tact. In 80% of cases, people with ALS die within two to five years of being diagnosed. However, I cannot simply accept that as a final prognosis when innovative research is being done and very encouraging advances are being made every day.
Let me explain. The ALS Society of Canada is very hopeful that a cure will be found by 2024, but if nothing is done to support the research efforts and if financial resources dry up, the desired medical advances will never be achieved. The fight against ALS must be a key priority. Over 3,000 Canadians have the disease, and at least three people die of it every day. At present, there is no known cure or effective treatment.
That is why we must act now. In 90% to 95% of cases, ALS strikes someone with no family history of the illness. It can happen at any age and affect any community. Researchers say that they have never been this close to finding at least a treatment that will slow down its unrelenting progression. Today, research, in particular the MinE project, is being conducted on the creation of a genetic data base for this disease. The project will map the full DNA profiles of 15,000 ALS patients and 7,500 control subjects.
People understand the importance of the fight against ALS, as indicated by the success of the ice bucket challenge around the world. Even at the local level many people participated in the challenge. I saw this show of support in my riding where many constituents took the challenge, including members of the Institut de technologie agroalimentaire in Saint-Hyacinthe, the Sisters of Saint Joseph of Saint-Hyacinthe, and even the mayor of Saint-Hyacinthe, Claude Corbeil, when I was a municipal councillor.
These community members took on the challenge to raise money for ALS, and also to raise awareness about this disease. I want to take this opportunity to thank everyone in Saint-Hyacinthe and Acton Vale who gave their time, energy, and money to this very important cause and who also have risen to the challenge.
In order to continue this record of solidarity for the third year in a row, the Centre ADN is organizing the ALS walk in Saint-Hyacinthe—Bagot with the proceeds going to the ALS Society of Canada. On June 29, 2016, more than 300 people from Saint-Hyacinthe attended the ADN challenge and raised $1,900. I thank them from the bottom of my heart, as well as the spokesperson for the event, Bertrand Godin, facilitator, analyst, and automobile journalist who contributes so much to promoting our riding.
Those who know my family and the sports enthusiasts in my family know that we are big fans of Mr. Godin's work.
This year, the Saint-Hyacinthe walk for ALS is happening on Saturday, May 6, 2017. We are once again expecting lots of people to come out for the walk, which is being organized by Denise Saint-Pierre, a long-time resident and volunteer, and the Centre ADN's walking and running club. Young and old alike are invited to walk or run two to five kilometres or more.
I am proud to announce to the House that, on May 6, I will be the honorary patron of the event. I encourage everyone in Saint-Hyacinthe and Acton Vale to walk or run in the third Saint-Hyacinthe walk for ALS to raise funds for ALS. This year's goal is $3,000. Together, we can do it.
This year, a wheelchair-accessible route will be blocked off, and volunteers will be on hand to collect donations. Everyone who comes out will be doing something fun that is also good for their health and wellness. Once again, I hope to see many of my fellow citizens at this community-building event on May 6.
Now the question is will we be able to live up to these wonderful initiatives and shows of solidarity? Will the government help develop these projects and initiatives in the fight against this disease? Will it fund research and shows of support?
On October 4, 2016, I had the honour of representing the New Democrats at the all-party ALS caucus organized by the ALS Society of Canada. Founded in 1977, this organization is the only not-for-profit active across the country funding ALS research and improving the quality of life for Canadians with this disease.
The ALS Society of Canada made the following recommendations: first, the federal government should invest $25 million over five years to maintain the momentum of support built over the past three years; second, it should invest $10 million to help each Canadian with ALS provide a DNA sample to Project MinE, as well as allow the transfer of all stored samples from deceased individuals.
Thanks to strong measures and the ALS Canada Research Program's challenge, our country could become a world leader in the fight against ALS. We already have a community of international researchers who are working on finding a cure for ALS. We can also be trailblazers in this field. We have the resources to carry out our plans. We can take action and design a comprehensive strategy to eradicate ALS.
I would like to quote Dr. David Taylor, vice-president of research at the ALS Society of Canada, who gives us hope for the future. He said:
Five years ago, the breadth of ALS research we are funding today would not have been possible simply because we didn’t know enough about the disease to be able to ask the kinds of questions that today’s researchers are investigating in their work. The fact that we now have the ability to explore ALS from different angles reflects the growing body of knowledge about the disease and the increasing likelihood of effective treatments being developed.
The motion before the House today proposes more than just recognizing the work of researchers. It also proposes putting greater emphasis on community leaders, provincial and territorial stakeholders, because they are the ones working on the front lines in the fight against this disease. They must be supported in their essential activities in assisting ALS patients and their caregivers.
Today my team even reached out to the president of the ALS Society of Canada, who told us that she is extremely hopeful that with the support of all parties, this motion will pass and new funding will be allocated to research and to the fight against ALS before 2019.
Passing this motion will not only represent a step in that direction, but it would also be a lovely tribute to the memory of the Honourable Mauril Bélanger. It would also help ensure that the current very promising research could continue. It would also make it possible for the awareness efforts to continue in close co-operation with provincial and territorial stakeholders.
Lastly, it would support the efforts of all the local stakeholders who are fighting every day to get the word out about ALS and the problems associated with it. More importantly, it would give ALS patients and their caregivers hope for a brighter future.