Thank you so much to all who have participated in our letter-writing campaign of holding our politicians accountable to their unanimous promise of Motion-105. Many of you have signed and sent the email link to your Member of Parliament and many of you have sent personalized letters.
Though our MP's are currently away on Christmas vacation, we are continuing our campaign as we thought it might be a good idea to have emails and letters waiting on their desks for the New Year so that research funding for ALS is on their minds! We will continue the campaign until mid-January, as the draft Federal Budget for 2019 will most likely be released in February, before finalization in March.
Many people use the holiday season as a time for giving back. If you would be so kind as to share the email link als.good.do/captureals/emailyourMP/ with your friends and family, it would provide hope and a smile to every Canadian suffering with ALS. Perhaps I could be so bold as to ask those of you willing to make a difference, to email the link to your contacts. This is a way people can be charitable this holiday season that costs nothing!
My friend Eddy describes our ask beautifully:
Capture ALS is a project that is capable of saving THOUSANDS of Canadians that are DYING from ALS through mapping the Genome of every Canadian Living with ALS. By doing so researchers and doctors will be able to develop new medicines and treatments to cure ALS. Please show your support to those who suffer from ALS by clicking the link als.good.do/captureals/emailyourMP/ which will allow you to email your Member of Parliament to inform them how important a cure for ALS is.
I try to think of ways to increase awareness for ALS. This initiative may have been thought of by others, but I thought I would give it a whirl! See the response from Canada Post below. It may not work, but I appreciate the personalized reply. Especially as Canada Post is not in everyone's good books right now!
Chairperson of the Stamp Advisory Committee
CANADA POST CORPORATION
2701 RIVERSIDE DRIVE SUITE N1070
OTTAWA ON K1A 0B1
November 9, 2018
My name is Carol Skinner, and I was diagnosed with Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease) at the age of 41. I would like to introduce ALS as a suggestion for a stamp subject.
ALS is a motor neuron disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. There are 3,000 Canadians living with ALS, as one dies, another is diagnosed. There is no cure for people living with ALS and most will die within two to five years of being diagnosed.
People living with ALS face a difficult journey. It is with strength and courage that people with ALS battle this devastating disease. It is with strength and courage that family and friends of people living with ALS persevere and support their loved ones. It is this strength and courage that allows people affected by ALS to maintain hope.
It is for this reason I think ALS should be considered as a Canada Post stamp subject. This will help increase awareness and advocacy for such a devastating disease. We should use platforms such as these to provide hope to Canadians suffering from ALS.
Its importance in the Canadian context:
Liberal Member of Parliament Mauril Bélanger died of ALS at the age of 61. He was a champion of the people who fought for language rights and women’s equality. On January 27, 2016, Belanger made history when he became the first MP in the House of Commons to use an electronic voice, re-introducing his private member’s bill on gender-neutral lyrics for O Canada. The bill passed in 2018.
Any significant anniversaries or upcoming events:
June is ALS Awareness month in Canada and every summer Walks for ALS are organized across the country. The Ottawa walk for ALS occurs every June. The WALK for ALS is the largest volunteer led fundraiser for ALS across the country. The WALK for ALS is about local communities coming together to raise funds and celebrate hope for a future without ALS. Funds received support Canadians living with ALS and invest in research to make ALS a treatable, not terminal disease.
Ideas for artwork:
The Blue Cornflower is the international flower of hope for ALS.
Thank you for your consideration of my stamp proposal. I am aware that it may take up to two years for this to happen, but I would kindly ask if there is any way to expedite this process in my special circumstances as I would love to be alive to see this idea come to fruition!
Please feel free to contact me with any questions.
Carol Jean Skinner (née Sharman)