John Richmond - Stroke Survivor
In a time of great darkness and change, my happy place is my peer support group and this month we have something special to celebrate just in time for the holidays (which I know are hard times for some). We have become a registered, federal non profit organization! Yup, little old us. We did it!
We did this ourselves. A group of stroke survivors dissatisfied with the status quo decided to organize and start a self-help advocacy group.
For my part, our group: Stroke Survivor Advocacy Group Canada – was a warm and wonderful place for me at a time when I was still trying to recover from my stroke and figure out what my life would look like post-stroke.
We went from being an informal group sharing our stories, journeys, triumphs and tragedies to an organized and outspoken advocacy group both for ourselves as well as for other stroke survivors across the country.
I was a social worker before my stroke, working with stroke survivors and other people with long term chronic illness and disability. Early in my career I embraced the idea of peer-support and self help. I could see that people with lived experience with illness were almost as good, if not better, than me at understanding, connecting with and helping people living with similar challenges.
So when I had a stroke myself I embraced the world of peer-support groups and was lucky enough to meet fellow stroke survivors, people I consider family, people who, like me, felt that other folks living with disability know what s best for themselves. We depend on health care professionals for treatment, but treatments that we ourselves have researched – using research and peer support to make informed decisions.
But an informal group only goes so far, and so now we have completed the lengthy and involved process of registering as a national non-profit, putting us in the same league as groups like Heart and Stroke or the Diabetes Association.
Not only are we registered but we did it ourselves: we did the research, attended webinars, filled out paperwork and paid the fees out of our own pockets. We are all volunteers, running a volunteer non-profit self-help group. Now that’s an accomplishment!
What’s in a name? A lot apparently.
We couldn’t use our chosen name SSAGC, because some governments don’t like advocacy and because we want to become a charity at some point, we knew the word “advocacy” would be a problem. So we chose Canadian Stroke Survivors Self Help as a legal name. That will be our official name for correspondence etc… but we are and always will be Stroke Survivor Advocacy Group Canada!
Join us, get involved and help us move to the next level. Nothing about us, without us.
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