What’s the best way to raise money and awareness when you have a rare disease?
Organize or participate in an event, duh.
That’s exactly what Dwayne Backer has been doing for 15 years as reported by Canadian based news site the Northern Life. Each year, he participates in the Dystonia Medical Research Foundation Canada sponsored Freedom to Move Walkathon to raise money and awareness for dystonia.
This year, he raised $9,541 dollars and thanked his family and community for their support in an open letter shared with the Northern Life. He even included a special shout-out to his former employer for a matching grant of $1,718. Can you guess who that is?
If you guessed Walmart, you’d be as shocked as we were! I guess people (and corporations?) are nicer in Canada.
Since dystonia has no cure, every cent raised is crucial to fund research that develops newer, more effective treatments, and of course, finds a cure.
But cold, hard cash isn’t the only purpose of the Walkathon. Awareness is key.
As Backer reiterated in his letter, as a neurological movement disorder, dystonia is frequently misdiagnosed even though it is widespread. That’s why raising awareness is crucial.
Even though research and treatments have advanced since he was diagnosed in the ’60s, Backer reminds us that there is still so much work to be done.
So, if you’re interested in participating in an event to raise awareness for dystonia, check out the Dystonia Medical Research Foundation. They have a list of events that you can join, and resources if you’d even like to start one yourself!
Let us know about your future events and we may able to feature you on our website!
