2020 Postcard from Palm Springs
Highlights from the 2020 CHDI HD Therapeutics Conference are now here! This year’s Postcard covers HTT-lowering therapeutics, including an
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Tara Johnson-Ouellette – Chapter Member – AB
When did you first become involved in volunteering with the Huntington Society of Canada? Why did you decide to do so?
I joined the Southern Alberta Chapter in the fall of 1994. My mother, Janice, was diagnosed with Huntington disease (HD) earlier in the year. She was adopted, so it was the first we had heard of HD. Following her diagnosis, I embarked on my journey of predictive testing. Following receiving my results, I wanted to make a difference and raise funds and awareness for this devastating disease.
What does it mean to you to be a volunteer?
It has empowered me to take control of something that we really can’t control. We can control when and how we raise awareness and funds for our family services and research. I have felt this also supported my mother and my family. They know I am absolutely committed to our cause.
Can you describe the specific events or campaigns you have helped?
Taking over the Achieve Gala from our long-time volunteer, Ada Ballard, has been an honor for me. Raising over $1,000,000 over a span of 30 years for the Huntington disease (HD) cause has been so rewarding. I know we have contributed to our families in a very meaningful way.
What have been some of the benefits of volunteering?
My early days of volunteering for the Huntington Society of Canada (HSC), specifically for the Southern Alberta Chapter, allowed me to grow personally and professionally – I was mentored by some terrific volunteers. Holding the role of Alberta Representative for Families on the National Board enhanced my understanding of governance and leadership. Now, almost three decades later, my volunteering has shifted to larger initiatives at the national level and mentoring the new members and families in our chapter.
Have there been any memorable/funny highlights from your time volunteering?
I have loved the partnerships we have built in the community; I am passionate about collaborations. Our relationship that we have built with Rotary is a highlight for me. My most memorable highlight with my fellow Rotarians of Rotary Club of Calgary Olympic is the Achieve Galas, which would run until 1 a.m. Everyone, young and old, would be “shaking a leg” on the dance floor until the DJ would not play another song! We all came out of our shells on those evenings!
Do you have a message for the Huntington disease community, or to someone considering volunteering for the cause?
I can honestly say I feel like I have gained more from the chapter than I gave. Just knowing that each of us can contribute, and not just in the form of money, has been so gratifying. Our community needs support in so many ways and we all have something we can give (time, funds, skills or support). The chapter is a second family to me and represents a bond that will never die. It provides a legacy for each of us and I am so proud to continue that legacy in memory of my mother. Please become engaged, reap the rewards, and more importantly, become one of the family!
