A memorable day
Monday, June 10, was the day that closed the loop of the event of Max’s Big Ride to End Duchenne Muscular Dystrophy. La Force & Max’s Big Ride in the parliament of Canada.
Our two families are living with Duchenne muscular dystrophy. We share the same battle, that of access to treatment. Yesterday was a memorable day because the government has heard us. There is still a lot of work to be done, but now we know that the government is supporting us in our fight.
Andrew Sedmihradsky, Max’s father, invited Anakin and me to join him and his family for the 2019 Max’s Big Ride event. We shared our stories and raised awareness about DMD and access to treatment. Yesterday was a beautiful demonstration that we are stronger together.
Parliament Hill in Ottawa
Early Monday morning, we met the Sedmihradsky family on Parliament Hill. To begin the day, we were greeted by the Liberal MP, the Honorable Karina Gould. Subsequently, we had the pleasure of meeting the Parliamentary Secretary to the Minister of Health, Pam Damoff. We also met with the Minister of Health, the Honorable Ginette Petitpas Taylor. We had the chance to comply with the Right Honourable Prime Minister of Canada, Justin Trudeau. Raising awareness among key players in Quebec and across Canada is an essential element. We were sharing our knowledge of new treatments (currently unavailable in Canada), so that they may become available quickly to children and young adults with DMD.
See pictures on the Facebook page here
More about Max’s Big Ride
For the fifth year in a row, eight-year-old Max Sedmihradsky is taking his dad Andrew and three-year-old sister Isla on a 600 km cargo bike ride to help find a cure for Duchenne muscular dystrophy. Max’s Big Ride had kicked off in Hamilton on Monday, June 3 and had ended on Parliament Hill in Ottawa on Sunday, June 9.
Since 2015, Max’s Big Ride has raised over $170,000, met the Prime Minister of Canada twice and has helped to identify exciting new directions for Duchenne research, including the establishment of Max’s Big Fellowship with the Gunning Lab at the University of Toronto Mississauga. Learn more here: Watch a video about the Gunning Lab here.
The approval process in Canada
When you’re suffering from a fatal (orphan) disease for which there is no cure, such as Duchenne muscular dystrophy, each year, month, day, hour and second that separates you from a potential treatment is VITAL.
Nowadays, in an era when science and technology are advancing at the speed of light, new forms of treatment for Duchenne muscular dystrophy, about to be approved to represent real hope. However, these new forms of treatment must go through an approval process that takes between 2 and four years before becoming available to patients.
When rare diseases are involved, patients should be included in this process so that it occurs as quickly as possible and that all provinces across Canada reimburse the medication.
Here is a brief overview of the process
We are stronger together
Marie-Catherine Du Berger
