In 2016, a group of parliamentarians and senators from all major political parties united to bring awareness to the challenges facing Canadians living with ALS. Chaired by Francis Drouin, MP for Glengarry-Prescott-Russell, the creation of the ALS Caucus on Parliament Hill was a significant achievement, and ALS Canada is proud to have played a role in spearheading it.

The Caucus provides an ongoing forum for discussion with the federal government with the goal of raising awareness and securing adequate and stable funding for ALS research to maintain the positive momentum created by the Ice Bucket Challenge. Its members have supported an ask to the federal government of $25 million in ALS research funding over a five-year period and a one-time commitment of $10 million in support of Project MinE, an international research partnership that will map the full DNA profiles of 15,000 people with ALS.

For Francis Drouin, the mission is personal. Inspired by the courage of his friend and colleague, former MP Mauril Bélanger, Francis decided to chair the ALS Caucus “to give a voice to those who don’t have one.” He says the idea is to build champions from across party lines, urging government to play a lead role in ALS research. “We have a core group in Parliament working on the issues,” he says, “but it is important to keep up the pressure.”

“Every member of Parliament saw what happened to Mauril,” says Francis. “There seemed to be a resolve among us to raise the profile of ALS.” He says it was devastating to witness the physical effects of ALS on Mauril, a man he remembers as a resolute and imposing figure who could easily command attention with his big voice. Until he watched Mauril lose his voice and his mobility, Francis had never encountered anyone with ALS, but through his work with the ALS Caucus, that has changed. He says he has witnessed a mix of realism, hope and grace in the ALS community that leaves him feeling “truly amazed” and determined to speak out, as he did recently when he addressed the 2017 ALS Canada Research Forum in April and the Ottawa-Outaouais WALK for ALS earlier this month.

David Tilson, MP for Dufferin-Caledon, whose father passed away from ALS more than 20 years ago, and who makes an annual statement on ALS to the House, also remembers the impact of seeing former MP Mauril Bélanger deteriorate very rapidly as a result of ALS. Although Mauril had to withdraw his candidacy for Speaker of the House, a unanimously supported motion provided him the opportunity to preside over the House of Commons as honorary Speaker on March 9, 2016. He used a computerized voice with the aid of his iPad. “That alone,” says David, “educated every Member of Parliament. Every MP knows now, what’s involved, not only for the people living with the disease, but also for their families.” According to him, awareness and education are top priorities for the newly formed ALS Caucus, so that doctors are better prepared to diagnose and ordinary Canadians are better informed about the effects of ALS and the implications for caregivers.

“We all have an obligation to try to make people aware,” says David. He sees tremendous potential through innovative campaigns like the Ice Bucket Challenge and annual events like the WALK for ALS, both of which he has participated in to help raise awareness and funding for ALS.

Another member of the ALS Caucus, Pam Damoff, MP for Oakville-North Burlington, is equally committed to raising the profile of ALS in government. Pam’s long-time friendship with the Robertson family has given her a uniquely personal perspective on ALS. When she addressed Parliament in November 2016 to honour the passing of Tim Robertson, she noted that during the nearly 13 years Tim lived with ALS, “he never let himself be defined by the disease.”

Pam remembers Tim as an avid sports fan, a music lover, a passionate advocate for the ALS community, and an ardent political campaigner. While Pam was running for office during the 2015 federal election, Tim carried signs on the back of his wheelchair while Pam and Beth, Tim’s wife, knocked on doors. He continued to attend baseball and hockey games, concerts, and political events. “He was out all the time,” recalls Pam, and “I never heard Tim complain once.”

“ALS is such an underfunded disease,” says Pam. More needs to be done to raise awareness about the toll it takes on entire families. In addition to the emotional struggles, people with ALS face enormous financial stress when they need to purchase costly equipment, pay for home and vehicle retrofits, and hire personal support workers when care becomes a round-the-clock necessity.

Generous and sustained investment in medical research for other serious diseases like cancer has helped prolong and even save lives. But ALS is different; few people live five years beyond their diagnosis. In addition to the hardship this represents for people with ALS and their families, these defining factors make it particularly difficult to raise substantial amounts of money. As Pam points out, “There is no one out there who can say, “my sister is here because of the advances made in research. We need that. We need survivors to advocate for the disease.”

Now more than ever, the ALS community has a voice in Parliament. Members of the Senate are also behind the cause, with Senator Munson championing the ALS community in the Upper Chamber. A vote in the House of Commons on private member’s motion M-105, championed by MP Judy Sgro, saw MPs unanimously support the federal government playing a leadership role in supporting ALS research, and in supporting national efforts to find a cure for ALS. Francis, David and Pam are optimistic about the future and with their ALS Caucus colleagues will continue to take action to support the tremendous need that exists for ALS research, awareness and support.


Posted in: Advocacy