It's been two weeks since my time as a board member for the Joubert Syndrome Foundation came to an end, stepping down after a four-year term (plus an extra pandemic-necessitated "victory lap" year), and I'm feeling reflective.
My first experience with the JSRDF's Board of Directors was at the Chicago conference in 2015. A couple people casually said I should join, but I wasn't ready for it. When I was formally asked two years later, I accepted. Though I was excited by the opportunity, I spent the majority of my first year feeling out of place.
You had about a dozen people, all with kids and some kind of work experience. Meanwhile, here I was, unemployed (work wouldn't happen for another year) and living with my parents. Of course everyone was great at involving me in things, but I still felt like one big fish out of water.
It wasn't until the following Spring that I started to feel like I was finding my place. The Board's Communications committee began sharing blog posts and articles I'd written and I was able to represent the Board and Foundation at a couple of events, like a Canadian Organization for Rare Disorders (CORD) conference being held in Ottawa.
My first year with the Board ended with my first ever business trip, a retreat in Dallas, Texas where I was invited to sit on the Family Support committee as a means for the Foundation to better represent and include adults with Joubert syndrome, something I did almost immediately with one or two ideas.
After this, there was the conference in Baltimore, where I got to show off a little, a retreat in Chicago, where I thoroughly enjoyed an amazing piece of deep-dish meatlovers pizza and, more seriously, proposed my own project of collecting profiles of adults with JS, frequently-asked questions, or whole stories in some cases, submitted in each person's own words. Here at home, I represented the Board, the Foundation, Joubert syndrome as a whole, and even myself at a genomics event held in Canada's Parliament. And literally one short week before the pandemic hit Ottawa, I was able to squeeze in another CORD conference.
And that brings us to COVID-time.
The past two-and-a-half years have been tough, not going to lie, with pandemic-related restrictions preventing travel and face-to-face interaction, and COVID-fatigue making participation seem like a chore at times. But it hasn't been all bad. The adult profiles were uploaded and posted last year, and I was interviewed about life with Joubert syndrome and being a board member by Healthing.ca, an online health and wellness magazine.
Despite March 2020 'til present, sitting on the Board of Directors and being able to represent the JSRDF has been fun, educational, and an all-around great experience. Big, big thank-you's to my fellow Board members and best of luck to the next crew!
Cheers!
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