After participating in the first ALS Caucus meeting in October of 2016, and meeting with then Minister of Health Jane Philpott that same winter, I knew it was improbable that ALS would receive funding from the Canadian Government in 2017 as it would take time. However, my hope was renewed after the above mentioned motion was passed unanimously. I mean, how often does government of all parties come together and unanimously support any cause? So when the Federal Government came out with budget 2018 this past week it felt like a punch in the gut when despite an 18.1 billion dollar deficit, there is $0 invested in ALS research. I don't understand, what is the point of a motion passing if there is no action to accompany it? The bill states "at the earliest opportunity", that opportunity came and went with the Federal Budget 2018.
It took my breath away, as does ALS.
I am heartbroken as I felt like all of my advocacy work was for nothing. I'm not sure why thousands of Canadians dying by slowly becoming paralyzed bit by bit, becoming "locked in" as you see in horror movies is not shocking or dramatic enough to become actionable by our first world government. Of course if there was a plane crash or terror attack, unlimited funds would be available to address Canadians dying. I feel #forgottenbutnotyetgone
I am aware, and do appreciate that our government has invested a large amount to Neuroscience. But there is no guarantee that 1 dollar of that will go towards ALS research. Of course any brain discovery may help lead to new revelations about the cause and/or treatment of ALS, but that is simply not good enough. Without targeted ALS Research, Canadians will continue dying in a terrifying manner every day, including myself.
I'm not quite sure what else I can do in order to advocate to our government, but thanks to the incredible support I have received since posting my frustration on Facebook, I promise I will keep fighting as best I can. Unfortunately that means continuing to ask friends, family and communities to persevere with fundraising on a grassroots level, even though you have all given so much already.
Everyone that takes the time to advocate and donate to ALS today is starting something big for tomorrow.
The Canadian government clearly wants to sit back and take their time, slowly going through the protocols of day-to-day politics, but ALS is urgent. ALS is “now or never”. Unfortunately, like with all diseases, there is a discovery stage. Time is needed to realize that it exists, time is needed to find out what it does, and time is needed to find out what needs to be done.
There is only one way to combat ALS and that is for dedicated, targeted research.
This takes enormous amounts of funding. Funding that the Canadian government is sadly not willing to give, at least not yet.
2018 comes with the frustration that our government does not see the urgency for those living with this disease right now. This does not mean that there is no point in advocating and bringing awareness to ALS. We are at the beginning of the race. Sadly those that we know with ALS currently may not make it, but it is important to think to the future, ironically something that an ALS diagnosis takes away.
Government funding for anything takes a long time and needs continuous commitment from those who want it. Until then everyone that has taken the time to advocate and donate to ALS now can hold their heads up high and know that they are at the start of something big. YOU are at the start of what is going to be the cure for ALS. It is not a matter of “if” but “when”.
I have posted the announcement and response from ALS Canada, as they are always more eloquent in expressing the cause then I am.
Even though we didn’t see what we had hoped for, we don’t have to stop making our voices heard.
We are continuing to meet with government to push for dedicated ALS research funding to fulfill the commitment in M-105.
You can add your voice by reaching out to your MP as well as Heath Minister Ginette Petitpas Taylor and Science Minister Kirsty Duncan to let them know #ALSresearchmatters to you, and that any funding for neuroscience research should include dedicated funding for ALS research and support for Project MinE through Genome Canada. Tag ALS Canada and use the hashtag #ALSresearchmatters.
The voices of our ALS community have power, and we can still make change happen.