ALS Canada Advocacy Update, April – June 2025

• We developed a blog post “Engaging with Elected Officials: ALS Advocacy 101” to support your advocacy efforts, offering an introduction to the fundamentals of advocacy and outlining practical steps you can take to drive change for people affected by ALS.

Federal Election

• Federal elections were held on April 28, 2025, and the Liberal Party, led by Mark Carney, was elected with a strong minority government of 170 seats.
• A new cabinet was named on May 13, 2025, by Prime Minister Carney, including Marjorie Michel as the new Minister of Health.
  • Minister Michel (Papineau, Quebec) previously served as the Chief of Staff to the Minister of Families, Children and Social Development and President of the Treasury Board. She was also the Deputy Chief of Staff in the office of Former Prime Minister Justin Trudeau.
  • Maggie Chi (Don Valley North, Ontario), has been named as the Parliamentary Secretary to the Minister of Health.
  • The Minister of Industry, Mélanie Joly (Ahuntsic-Cartierville, Quebec), has replaced the Minister of Innovation, Science and Industry.
  • There is now a single mandate letter that applies to all ministers.
• The federal government has announced that there will not be a federal budget this spring. Instead, the 2025-2026 Budget is expected to be tabled in the fall.
• We look forward to continuing to strengthening relationships and advocating for increased ALS research funding, improved care and amplifying the voices of the nearly 4,000 Canadians living with ALS.
• With many new MPs, and a newly appointed Minister of Health and Parliamentary Secretary, there are many opportunities to engage with MPs and share the priorities of the ALS community. Stay tuned for an upcoming e-advocacy campaign you can participate in to connect with your local Member of Parliament and help keep ALS on the national agenda.

ALS Caucus

• On June 17^th, ALS Canada participated in the first Parliamentary ALS Caucus Meeting of 2025. The ALS Caucus is a non-partisan forum that brings MPs and Senators together to raise awareness and discuss solutions to the urgent needs of people affected by ALS.
• Alongside ALS Canada Community Ambassador Norman MacIsaac, ALS Canada briefed the members on the current ALS research landscape, the federal advocacy priorities of the ALS community, and how Parliamentarians can play a pivotal role in advancing progress.
• Attendees included:
  • Peter Fragiskatos, MP, London North Centre (Chair)
  • Marie-Hélène Gaudreau, MP, Laurentides—Labelle (Co-Chair)
  • Judy Sgro, MP, Humber River—Black Creek
  • Annie Koutrakis, MP, Vimy
  • Zoe Royer, MP, Port Moody—Coquitlam
  • Maggie Chi, MP and Parliamentary Secretary to the Minister of Health, Don Valley North

Ontario Budget 2025

• On May 15^th, 2025, the Ontario government released the 2025 Budget. The funding for the Ontario Provincial ALS Program was included in the 2024 Fall Economic Statement.
• ALS Canada is pleased to see the following investments in the health sector:
  • The commitment of $1.8 billion to connect approximately two million people to primary care.
  • $235 million in 2025–26 to establish and expand up to 80 additional primary care teams across the province.
  • Continued investments in long-term care homes and hospitals, such as the new centre for brain science at Sunnybrook Health Sciences Centre, home to Sunnybrook’s ALS Clinic.
• These investments reflect ALS Canada’s continued advocacy for improved access to care in Ontario. There is still progress to be made, and together with the ALS community, we remain committed to ensuring that our collective voices are being heard.
• Keep an eye out for a new e-advocacy campaign to help you recognize the government’s support of the Ontario Provincial ALS Program and take action by sending a letter.

• On June 3^rd, Anthony Leardi, Parliamentary Assistant to the Minister of Health, moved unanimous consent for Members of Provincial Parliament to wear pins in recognition of June as ALS Awareness Month at the Legislative Assembly of Ontario.
  • Minister of Health, Sylvia Jones, introduced visitors of the ALS Society of Canada at the Legislature.
  • MPP Tyler Watt delivered a Member’s Statement on ALS Awareness Month, sharinghis personal connection to the ALS community.
• ALS Canada hosted 22 Walk to End ALS events across Ontario and elected officials from all levels of government were invited to attend and/or provide a video message in support of their local Walk – an important opportunity for them to engage with the ALS community and hear firsthand about the impacts of this devastating disease
  • Inviting elected officials is an important aspect of ALS Canada’s advocacy efforts, helping to build and grow relationships with Ontario-based elected officials and raise awareness.
  • 27 elected officials attended.
  • 14 Walk videos were received.
  • 3 June Awareness Month videos were received.
• The videos from MPs and Ontario-based MPPs voicing their support for people affected by ALS were published on ALS Canada’s social media channels.

• On May 6, ALS Canada and ALS Canada Community Ambassador Paula Trefiak met with the pan-Canadian Pharmaceutical Alliance (pCPA) in advance of Qalsody reimbursement negotiations to highlight the urgent need for approved therapies to be made available in a timely and equitable manner for the ALS community.
• On May 23, ALS Canada met with MP Peter Fragiskatos (Chair of the ALS Caucus) to discuss the reinvigoration of the Caucus and the federal government’s role in addressing the urgent and unmet needs of people living with ALS.
• On June 3, ALS Canada met with MPP Tyler Watt to discuss recent advancements in the ALS landscape and the ALS community’s provincial advocacy priorities.
• ALS Canada joined the ALS Society of Newfoundland and Labrador in a meeting with the Newfoundland and Labrador Department of Health and Community Services to discuss the importance of access to ALS care and support in the province.