Additional Advocacy

An ongoing voice on Parliament Hill

October 4, 2016 was a momentous day for the ALS cause in Canada as the first meeting of the federal ALS Caucus was held. The ALS Caucus represents an established group of Members of Parliament and Senators from all parties who have come together to better understand the realities of ALS after seeing their colleague Mauril Bélanger, MP, progress rapidly following his ALS diagnosis. The Caucus provides an ongoing forum for discussion of the research, treatment and care challenges presented by an ALS diagnosis, as well as opportunities to address them.

Improved support for veterans with ALS

Research suggests that people who served in the military are approximately twice as likely to develop ALS compared to those who have not served. Because of the progressive nature of ALS, some veterans were dying of the disease before having the chance to submit their case to Veterans Affairs Canada. It was clear that veterans diagnosed with ALS needed better, faster access to support.

Along with our volunteer advocates, we helped lead efforts to improve disability benefits for veterans living with ALS. In 2010, Veterans Affairs Canada increased the benefits and improved support for veterans living with ALS. To learn more, visit veterans.gc.ca or contact the Royal Canadian Legion.

Genetic fairness: preventing genetic discrimination

Though the precise cause or causes of ALS are unknown, research is increasingly suggesting that genetics may play a big role in the development of the disease regardless of whether it is passed from a parent to his or her child, which happens in approximately 5 to 10% of ALS cases.

As a member of the Canadian Coalition for Genetic Fairness (CCGF), we actively lobbied government to pass Bill S-201, which seeks to prohibit and prevent genetic discrimination. The bill received royal assent in May 2017 and was passed into law. More information is available on the CCGF website