Will you help me make a difference on behalf of all Canadians living with ALS?
I have initiated a letter-writing campaign to hold our government accountable to their promise of supporting national efforts to find a cure for ALS at the earliest opportunity! Meaning, we want to see direct and targeted funding towards research for ALS on the 2019 Federal Budget.
We have made it easy for you to participate by clicking on the link below, in which you will find our e-advocacy website where you can email your MP directly. I am also asking that you send a good old fashioned letter by mail (postage is free!). We have created a generic letter that is easy for anyone to send out. Feel free to personalize, I did and have included my personalized version below. After I sent it, I actually met with my MP who promised to support us.
Many thanks to Dad for writing the initial draft of the letter with the help of Mom and Chelsea.
Thanks to Eddy "Let's Roll" for inspiring me to do more, for his french translations, and his unstoppable advocacy.
Thanks to Bill for his petition e-1451, which the government responded to by stating they have given some money in the past, and basically answered with spin and of course no real answer. Although it may not be a "win" I see it as a stepping stone and continued pressure that they cannot ignore if we keep asking!
Thanks to ALS Canada for their efforts and collaboration in helping us initiate this campaign and supporting us in making our voices as loud as possible.
And thanks to you, for making a real difference to people who are suffering.
Generic MP Letter
Member of Parliament for <Insert your riding>
House of Commons
October 11, 2018
Dear Minister<Insert MP name>,
I am writing as one of your constituents to express my concerns for Canadians living with ALS.
ALS is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body. As the muscles break down, a person living with ALS will lose the ability to walk, talk, eat, swallow and breathe. It is a DEATH SENTENCE. There is no cure and most die within 2 to 5 years of being diagnosed.
ALS is more common than you might think; it has a high incidence/low prevalence rate. The incidence of ALS has an estimated lifetime risk of 1 in 400. The reason there are 3,000 Canadians living with ALS is because of its devastation and how quickly it kills.
The federal government has a duty to protect the lives of Canadians. Whenever there is an event that kills Canadians, the government does whatever it can to prevent this from happening again. Where is the same resolve in treating the killer ALS?
On April 5, 2017 Motion-105 was passed UNANIMOUSLY by our Members of Parliament:
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 play a leadership role in supporting ALS research, and to support national efforts to find a cure for ALS at the earliest opportunity.
The ALS community has never been as hopeful as with the passing of this motion. That changed when the 2018 budget presented ZERO targeted dollars towards ALS research. Over a year and a half later, we are left waiting and left dying. Where is the action supporting M-105? Where is the government leadership role?
The ALS Society of Canada has authored a strategy, which answers this motion. It’s recommendation is that the Government of Canada invest $35 million over the next 5 years in CAPTURE-ALS, a groundbreaking, inter-disciplinary, foundational project that will build capacity for research internationally and across Canada.
Will you support the ALS Society of Canada’s ask of targeted federal funding towards ALS Research in the 2019 Federal Budget?
ALS is not an incurable disease it is simply grossly underfunded.
Let ALS stand for ALL LIVES SAVED!
<Sign your name here>
<Add your phone number>
French MP Letter
<Insérer le nom de votre député.e>
Député.e de <Insérez votre circonscription>
Chambre des communes
Monsieur / Madame le / la <Insérer le nom de votre député.e>,
Je vous écris en tant qu'un de vos électeurs pour exprimer mes préoccupations pour les Canadiens vivant avec la SLA.
La SLA est une maladie qui paralyse progressivement les personnes car le cerveau n'est plus capable de communiquer avec les muscles du corps. À mesure que les muscles tombent en panne, une personne atteinte de la SLA perdra la capacité de marcher, de parler, de manger, d’avaler et de respirer. C'est une CONDAMNATION À MORT. Il n'y a pas de remède et la plupart meurent dans les 2 à 5 ans suivant le diagnostic.
La SLA est plus courante que vous ne le pensez, elle a un taux d'incidence haut / de prévalence faible. L'incidence de la SLA a un risque à vie estimé à 1 sur 400 (NIH US). La raison pour laquelle 3 000 Canadiens vivent avec la SLA est due à ses ravages et à sa rapidité de destruction.
Le gouvernement fédéral a le devoir de protéger la vie des Canadiens. Chaque fois qu'il y a un incident qui tue des Canadiens, le gouvernement fait tout ce qui est en son pouvoir pour empêcher que cela se reproduise. Où est la même résolution dans le traitement de la SLA mortelle?
Le 5 avril 2017, la motion 105 a été adoptée À L'UNANIMITÉ par nos députés:
Que, compte tenu du décès de plus de 1 000 Canadiens chaque année, y compris la perte tragique de l'honorable Mauril Bélanger, ancien député d'Ottawa — Vanier le 16 août 2016, à la suite de la sclérose latérale amyotrophique (SLA):
(a) réitérer son désir et son engagement, en collaboration avec les intervenants provinciaux et territoriaux, de lutter contre la SLA par la recherche et la sensibilisation; et
(b) demander au gouvernement de jouer un rôle de premier plan dans le soutien à la recherche sur la SLA et de soutenir les efforts nationaux visant à trouver un remède à la SLA dès que possible.
La communauté SLA n'a jamais été aussi optimiste qu'avec l'adoption de cette motion. Tout cela a changé lorsque le budget de 2018 a présenté ZÉRO pour la recherche sur la SLA. Plus d'un an et demi plus tard, nous sommes en attente. Où est l'action à l'appui de M-105? Quelle est la stratégie globale ?
La Société canadienne de la SLA a rédigé une stratégie qui répond à cette motion. Elle a recommandé que le gouvernement du Canada investisse 35 millions de dollars au cours des cinq prochaines années dans CAPTURE-ALS, un projet fondamental, interdisciplinaire et fondamental qui renforcera les capacités de recherche à l’échelle internationale et à l’échelle du Canada.
Soutiendrez-vous la demande de la Société canadienne de la SLA concernant le financement fédéral ciblé à la recherche sur la SLA dans le budget fédéral de 2019?
La SLA n'est pas une maladie incurable, elle est simplement sous-financée.
<Signer votre nom ici>
<Ajoutez votre numéro de téléphone>
Personalized Letter to my MP
Member of Parliament for Kanata-Carleton
House of Commons
K1A 0A6 September 4, 2018
Dear Minister McCrimmon,
I am writing as one of your constituents to express my concerns as someone living with ALS, and to ask for your help.
I was diagnosed with ALS on September 19, 2013 at the age of 41.
At the time, I was working for the Canadian Mental Health Association. I was an art therapist facilitating groups for individuals living with both mental health and substance use disorders.
ALS stole my career, my home, my future, my sense of adventure and my control. ALS is a serial killer that has a hold of me and there is no treatment. It is slowly stealing my physical abilities, bit by bit, day by day, until I become paralyzed in my own body, as my mind remains fully aware of what is happening to me. Even then, it isn’t satisfied, it will keep attacking my body, and will take everything from me, including my last breath.
ALS has yet to steal my voice, and that is why I am here today, to advocate on behalf of all Canadians. For those we have lost, including Mauril Belanger and Brian Parsons, for those who are living with, and those who will be diagnosed with this devastating disease.
ALS is more common than you might think. The incidence of sporadic ALS shows little variation in the western countries with an estimated lifetime risk of 1 in 400. (US NIH)
The reason there is a relatively small number of Canadians diagnosed with ALS at a time, is because of its devastation and how quickly it kills.
The federal government has a duty to protect the lives of Canadians. Whenever there is an event that kills Canadians, the government does whatever it can do to prevent this from happening again. Where is the same resolve in treating the killer ALS?
On April 5, 2017 Motion 105 was passed unanimously by our Members of Parliament:
That, in light of the death of over 1000 Canadians each year, as a consequence of ALS, the house a) reiterate it’s 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 an launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity.
The ALS community has never been as hopeful as with the passing of this motion. That all changed when the 2018 budget presented ZERO targeted dollars towards ALS research. Over a year and a half later, we are left waiting and left dying. Where is the action supporting M-105? What is the comprehensive strategy?
Minister McCrimmon, will you support the ALS Society of Canada’s ask of targeted federal funding towards ALS Research in the 2019 Federal Budget?
Will you be a champion of our cause through advocacy by supporting the Federal All-Party ALS Caucus and increase awareness by attending events supporting ALS such as the Annual Walk to Defeat ALS and Annual Hike for ALS?
Should you require further information, please do not hesitate to contact me.