Blog Archives

5th Annual Bonspiel

3/22/2018

Thank you to my awesome team, the Rolling Stones! (Tom, Dasa & Laura)

What a fantastic day we had at the 5th Annual Curling for Carol Bonspiel. What an amazing group of people who showed up, everyone was so friendly and it was so fun to have it on St. Patrick's Day!

A huge thank you and shout out to Robin, without her this event would never happen. Robin was committed to having an Annual Bonspiel, and for anyone who has ever organized a charity event, you can imagine how much work is involved. I joke that she didn't know what she was getting herself into 5 years ago by insisting upon making it an annual event, as I wasn't supposed to live this long!

Also a big thank you to Coralee who handled so much of the behind the scenes and registration, and does it all with such enthusiasm. Robin and Coralee are so busy working the event, they never even have a chance to curl!

Of course thanks to Brittany and Conan for doing an amazing job of getting so many teams signed up!

Thank you to all of the teams who participated. You are truly a unique and energetic group of people!

We had an incredible array of prizes this year. Thank you to our sponsors and to Brittany, Mom & Dad for pounding the pavement for raffle donations. I think we sold an unprecedented amount of tickets this year, I mean, who could say no to mom & dad???

Thank you to my amazing CMHA peeps and partners, and new friends I met at the event.

Thank you to everyone who donated, helped out and supported us behind the scenes. Because of you we raised $2900!

This event came at the perfect time for me. It happened when I was feeling quite down, hopeless and dejected. Not only because winter is a particularly difficult time, it's tough to get out in the snow and cold. But also because if you read my #forgottenbutnotyetgone blog post, you'll know that despite advocacy efforts $0 of the 2018 Federal Budget went towards research for ALS. It was particularly frustrating due to the unanimous all-party decision to vote in favour of Motion 105 back in April, where they voted to combat ALS by funding research and to launch a comprehensive strategy to eradicate ALS at the earliest opportunity. All talk, and no action.

It is grassroots efforts and community funding through events like this that will continue to make a difference in the lives of people living with ALS. Whenever I feel like giving up, it is people like you who won't let me! So thank you all for your love and support, I certainly wouldn't be here without you.

We even made the news this year! If you click on the button below, it takes you to the right news page, however, you must click on the Saturday March 17th video to see us curling! We are at 23 minutes and 10 seconds. Beautiful form Sean, Travis says you should be expecting a call soon from the Canadian Olympic Committee!

CTV News

4 Comments

Stephen Hawking 1942 - 2018

3/14/2018

4 Comments

Stephen Hawking was not only a genius and a legend, but someone who was known not because he had an ALS diagnosis, but for the man he was.

Please check out the article below written by Leslie Young. Fabulously done, make sure to click on the "listen" button to have a small Professor Hawking experience. It is an honour to be quoted and included in one of his many tributes.

I have also included an interview with John Oliver, so we can share in his fabulous sense of humour.

Global News Article

4 Comments

#forgottenbutnotyetgone

3/3/2018

5 Comments

On April 6, 2017, M-105, a bill introduced by MP Judy Sgro seeking ALS research support from the Federal Government passed unanimously with a 283-0 vote. The text of the motion states: That, in light of the death of over 1000 Canadians each year, including the tragic loss of the Honourable Mauril Bélanger, former MP for Ottawa—Vanier on August 16, 2016, as a consequence of Amyotrophic Lateral Sclerosis (ALS), the House: (a) reiterate its desire and commitment to, in collaboration with provincial and territorial stakeholders, combat ALS via research and awareness; and (b) call upon the government to increase funding for ALS research, and to substantially increase national efforts to develop and launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity.

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.

Travis's thoughts:

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”.

Click on the button below for the highlights of the 2018 budget from a CBC news article.

I have posted the announcement and response from ALS Canada, as they are always more eloquent in expressing the cause then I am.

Federal Budget Highlights

Yesterday Finance Minister Bill Morneau tabled the 2018 federal budget. We are encouraged by the increased federal support for fundamental research and #Budget2018’s commitment to science and innovation, yet disappointed not to see any dedicated support for #ALSresearch. This has been a focus for our advocacy efforts because of its potential to get us closer to a future without ALS. We will continue to push for this tremendous need through various channels within government and will keep up our engagement with key government stakeholders on issues of importance to the ALS community.

We are hearing from so many of you about your frustration and disappointment in not seeing any dedicated funding for ALS research in the 2018 budget.
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.

5 Comments

5th Annual Bonspiel

Stephen Hawking 1942 - 2018

#forgottenbutnotyetgone

Author

Archives