The realities of living with ALS – a challenging and terminal disease – led Carol Skinner and Eddy Lefrançois, two Canadians affected by ALS, to start a letter-writing campaign. The campaign encouraged fellow Canadians to contact their elected federal representative to ask for sustainable and direct ALS research funding. Over 2,300 Canadians joined Carol and Eddy in this initiative, yet sadly, Eddy died in January 2019 before he could see the results of his initiative.

To support the efforts put forward by our community, we have sent a letter to Health Minister Ginette Petitpas Taylor explaining why the federal government must play a role in supporting ALS research. The letter outlines federal investment in ALS research to date, along with an analysis based on our own fact-checking, to illustrate the ongoing need for sustainable and direct ALS research investment.

Read the letter. 

Letter available in English Only

Posted in: Advocacy