Brief BioMy life changed forever in June 2013. This was when my son Max was diagnosed with Duchenne muscular dystrophy - a fatal illness with no cure. It is a disease that affects mainly boys, putting them in wheelchairs in their early teens and shortening their lives considerably. It is news that no parent should ever receive and something I would not wish upon anyone. In response to Max’s diagnosis, I began Max's Big Ride in 2015 with my family. It began as a 600 km father and son cargo bike ride between Hamilton and Ottawa and has since expanded to include a variety of successful community-based fundraisers. Since its inception, MBR has raised over $250,000 to help find a cure for Duchenne. We are now a not-for-profit that currently fundraises directly for the Gunning Group Lab at the University of Toronto Mississauga to fund Max’s Big Fellowship, an award that is granted to PhD-stream candidates whose research focus is to make molecules that inhibit the proteins implicated in driving Duchenne. Along the way we have been featured in the media, Max has met the Prime Minister (twice!) and he even has a fundraising beer named after him - Max’s Big Beer.
The past six years have shown me that I most definitely can make a difference simply by putting myself out there, asking questions and reimagining how things might be. This has made me more determined than ever. Initially, my efforts were focused on raising funds and awareness, but my work has since expanded into advocacy, collaboration and identifying new opportunities and unmet needs. Through this work, I have recognized the need for a framework to help me develop the skills, networks and knowledge I need to realize my future goals in the Duchenne community, healthcare and beyond. I am very excited to be a part of the TRP program and to be studying at the University of Toronto.