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Motion 105

2/22/2017

Thrilled to have M-105 discussed by our Ministers' of Parliament from all parties on February 21, 2017. Thanks to my amazing cousin Chelsea, who works for our Government and MP Don Davies who also speaks for this motion, for giving me the heads up. I was able to watch it live!

I have posted the full video as I know many from the ALS Community are interested.

For my friends and family, make sure to watch MP Francis Drouin (at minute 37). He is the Chair of the All-Party ALS Caucus. Travis and I were fortunate enough to attend one of the meetings and we are so grateful to all who participate.

It was quite an honour to get a shout-out from Parliament. It is a day I will not forget!

Video Source is from ParlVu.

The Honourable Judy A. Sgro - Private Members' Motions - Current Session (Filtered Results) 42nd Parliament, 1st Session
M-105
Amyotrophic Lateral Sclerosis

Text of the Motion
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.

Latest Activity Debated (2017.02.21)
History
Placed on Notice 2016.12.02
Placed in the Order of Precedence 2016.12.07
Debated 2017.02.21

3 Comments

1 Month!

2/18/2017

1 Comment

I can't tell you how excited I am to see you at this event! We've had so much fun the last 3 years, not only do you get to throw rocks and yell at people, but you can drink beer and dress up in wacky outfits, all for a good cause! Bring your friends, family, babies, cash for raffle tickets and pants that won't split!

This is an accessible event, you can curl in a wheelchair!

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Broken

2/16/2017

10 Comments

Thank you to McGarry, for expressing this sentiment when we saw you last, I don't mind my cat-scratched couch anymore because of you!

Ah, it's been awhile since I've written a personal post. I have to admit December was a tough one. Canadian winters are brutal to those in wheelchairs! It's been a particularly snowy one, so I've been cooped up inside, too afraid to go out on my own for fear of getting stuck. Obviously living with ALS brings such a difficult mental burden and I admit it got the best of me in December. The short dark days and cold, and Travis working late had me feeling sorry for myself and thinking too much about what is to become of me. I absolutely felt broken. My first Christmas without my brother Don. Then my Granny died. 2016 really did take the best of them. Ann Peterson was 96 years old, and never stopped being a firecracker. You couldn't meet a more sweet and adorable lady, who was still in love with her husband, though my Grampa died many years ago. She would always watch out the window waiting for your arrival, or waving you goodbye. Granny approved of Travis, so I married him!

I have now broken out of brokenness!?! Travis took me to Antigua in January, and the vitamin D did a lot for my mental health recovery! I do realize how lucky I am, not everyone gets to go to the Caribbean to alleviate their woes, however, if you do have use of your legs, get out in the sunshine despite the cold and snow, it is truly healing!

I have also been lucky enough to continue with ALS Advocacy. On Monday, Travis & I met with Canada's Minister of Health Jane Philpott. It truly does bring purpose and meaning to my life to work towards helping others and I'm forever grateful for the opportunity. We represented the ALS Society of Canada in sharing our story and asking the Federal Government to provide much needed funding towards research for treatment and a cure. If you are interested in the "Ask", there is more information on my media page. We are especially grateful to the government MP's and employees who have been participating in the ALS Caucus.

Some of my talking points included:

~my diagnosis September 19, 2013. I was 41. CMHA, EMG, 2-3 years left to live (this Sept will be 4 years!)

~with the diagnosis came loss, career I was proud of, first home we bought together, independence, I can no longer drive, and have had to learn to give up control, of my body, my future, my dreams with my husband

~every day I discover ADL I can no longer accomplish on my own, it began with walking, now is moving to my arms and we are looking into support as it is no longer safe for me to shower on my own. As a strong independent women with a stubborn sense of pride inherited from the women in my family, you can imagine my frustration!

~Living with a terminal illness takes a tremendous mental toll on myself and my family. Travis and I have conversations that would shock most people

~despite our trials and tribulations I do feel grateful and blessed. I am so thankful to be living in the best and most beautiful country in the world. I have incredible friends and family who still see me as myself and not just my disability. I have learned to not sweat the small stuff and appreciate the precious moments in life, like when my cat Buddy jumps on Travis’s shoulders like a parrot!

~Canada prides itself on protecting the safety and security of Canadians. ALS is everyone’s worst horror movie nightmare, slowly becoming trapped in your own body until you are paralyzed, while being completely aware of what’s happening.

~We are desperate for help from the Canadian government. With funding I truly believe that treatment is possible. I am impressed with Minister Philpott's work involving HIV/AIDS in Africa, with Travis being South African, we are aware of the devastation of the illness. But with education, awareness and funding, HIV/AIDS is no longer the horrific death sentence it once was. I wish the same result for those of us living with ALS. With the current research being done towards ALS we are on the verge of important discoveries.

~I am grateful for the opportunity to advocate on behalf of Canadians living with ALS, especially those who have lost their ability to speak. I am also very grateful to the ALS Society of Canada not only for their support with equipment and home visits, but for the incredibly smart, passionate people advancing research for treatment and inevitably a cure.

Beach Wheelchair!

Frans & Ann Peterson, my Granny & Grampa

10 Comments

Project MinE

2/6/2017

1 Comment

WHY DO SOME PEOPLE DEVELOP ALS WHILE OTHERS DO NOT?
Canada joins international research partnership to find answers and better target the disease
Canada has become the 17th country to join an international research partnership that is working to determine why some people develop ALS while others do not, with numerous Canadian ALS researchers stepping up in a cross-country collaboration that is among the first of its kind in the country.

The ALS Society of Canada (ALS Canada), in partnership with provincial ALS Societies across the country, is spearheading efforts for the Canadian component of Project MinE, a multi-national initiative that gained momentum following the Ice Bucket Challenge.

Project MinE will map the full DNA profiles of 15,000 people with ALS and 7,500 control subjects, establishing a global resource of human data that will enable scientists worldwide to better target the disease by understanding the genetic signature that leads someone to develop ALS.

By accumulating such a large amount of data that no one country could achieve alone, it is expected that Project MinE could identify new genetic causes of the disease. The discoveries gained through Project MinE have the potential to significantly accelerate our ability to advance treatment possibilities that could slow down or even stop ALS. Canada's goal is to contribute up to 1,000 DNA profiles to the international effort.

Learn more about Canada's participation in Project MinE

Project MinE

Project MinE Canada

I hope I get a chance to participate and donate my DNA!

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Motion 105

1 Month!

Broken

Project MinE

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