This website uses cookies. If you continue to use the site you accept their use. Learn more ×

Help Create a Future without ALS

Help Create a Future without ALS

In April 2017, Canada’s House of Commons unanimously approved Motion M-105, which called upon the federal government to play a leadership role in supporting ALS research, and to support national efforts to find a cure for ALS at the earliest opportunity.

Since then, the federal government has taken little action to make good on its promise. Carol Skinner and Eddy Lefrançois, two Canadians living with ALS, want to change that. They are inviting you to join a letter-writing campaign imploring Members of Parliament to hold themselves accountable to Motion-105.

“My goal is to have direct and targeted federal ...

In April 2017, Canada’s House of Commons unanimously approved Motion M-105, which called upon the federal government to play a leadership role in supporting ALS research, and to support national efforts to find a cure for ALS at the earliest opportunity.

Since then, the federal government has taken little action to make good on its promise. Carol Skinner and Eddy Lefrançois, two Canadians living with ALS, want to change that. They are inviting you to join a letter-writing campaign imploring Members of Parliament to hold themselves accountable to Motion-105.

“My goal is to have direct and targeted federal funding for ALS research in the next federal budget,” says Carol. Diagnosed with ALS at the age of 41, Carol recently passed the five-year anniversary of her diagnosis – a difficult day, and one she didn’t expect to be alive to see.

Eddy, on the other hand, has been living with ALS for 26 years, far beyond the two to five-year lifespan that the majority of Canadians can expect following their ALS diagnosis.

 The letter asks the federal government to support CAPTURE ALS, a groundbreaking, interdisciplinary research project that seeks to answer why one person diagnosed with ALS will live only another 5 months while another will live for 5 years – insights that will in turn inform the development of personalized medicine and massively accelerate the development of effective treatments for the disease.

An initiative of the ALS Society of Canada, CAPTURE ALS will capture the unique biological information of Canadians living with ALS before the disease takes their life.  By analyzing whole genome sequences, proteins, gene expression, epigenetics and biochemical metabolites, researchers will be able to obtain a biological fingerprint for each person living with ALS and understand how this relates to the individual’s disease course.

CAPTURE ALS represents an incredible investment in ALS research that can make meaningful and impactful discoveries about the disease. It will build national and international research capacity to ensure the competitiveness of the Canadian health sciences industry and help Canada become a leader in innovative, inter-disciplinary and international research.

What you can do:

Read ALS Canada’s submission to the federal government about CAPTURE ALS, and encourage your MP to support CAPTURE ALS by sending them an email and a letter in the mail.

Send an email using the tool on the right, and please find instructions below for regular mail:

  • Simply copy and paste the content of the email into a separate document. You can use the default text, or you can customize it to make your message even more powerful.
  • Letters to the House of Commons require no postage, and the address for all MPs is the same. Address your letter as follows:

<Your MP's name> – you can look them up here
House of Commons, Ottawa, ON  K1A 0A6

+

Email your Member of Parliament

Your message will be sent to your local MP. MP Francis Drouin, who chairs the ALS Caucus, the Honourable Ginette Petitpas Taylor, Minister of Health and the Honourable Bill Morneau, Minister of Finance, will also be copied on the email.

A copy of your letter will also be shared with ALS Canada. 

Compose your email