Meet Your Federal Elected Representative
A great way to make your voice heard is to meet with your federal elected representative – your Member of Parliament (MP) – to personally share your story and why you believe that all treatments for Duchenne considered to be safe and effective, are made available in this country as quickly as possible.
Our Advocacy Package includes documents that will help you with the following steps:
- Write your federal elected representative – Member of Parliament (MP) – to request a meeting to discuss the lack of Duchenne medications approved in Canada (see Constituent Letter to MPP)
• Contact information for MPs can be found at: https://www.ourcommons.ca/Parliamentarians/en/members
- Prepare for and meet with your MP (see Meeting Outline & Fact Sheet)
- Write a draft letter for your MP to send to the Minister of Health (see MP letter to Minister of Health)
- Write to the Minister of Health yourself (see Resident Letter to Minister of Health) – e-mail: firstname.lastname@example.org
To download the Advocacy Package, simply click the link below.
Duchenne muscular dystrophy is a rare, progressive and ultimately fatal genetic disorder that mainly affects boys. In Canada, there are about 800 boys living with the disease.
Duchenne causes muscles to gradually weaken, leaving boys in a wheelchair by age 12, with difficulty breathing as early as 15, and with a life expectancy in their 20s to 30s.
New therapies that slow the damage caused by Duchenne have been approved in Europe and the United States for several years now, but Canadians are still waiting.
We want to hear from you!
This campaign is a collaboration between Jesse’s Journey, La Force DMD and Stand for Duchenne Canada. We hope you will join our efforts by using the advocacy tools on this website. Please reach out to any of our groups below with any questions about our work, to share your Duchenne stories, or to tell us how we can make this site even better.