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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Corinne Bees – Chapter member, Amaryllis seller – BC
When did you first become involved in volunteering with the Huntington Society of Canada (HSC)? Why did you decide to do so?
I have always been afraid of Huntington disease (HD) ever since an autopsy in 1966 confirmed my mother died of HD. I needed to do something with that fear. I volunteered with CUSO (Canadian University Overseas) and I spent two years teaching in West Africa. After that, we settled in Vancouver. I soon became involved with the Vancouver Chapter, which was headed at that time by Doris Bersea. I have stayed on the board, except for one year, in various capacities including chairperson, since that time.
What does it mean to you to be a volunteer?
Being a volunteer helps me to feel that I am doing something—nothing big, just plugging along contributing where I can.
Can you describe the specific events or campaigns you have helped?
In the early and mid seventies I typed out a newspaper and made copies using the machine at school. Then my children and I stapled and collated the pages. I don’t remember how it was distributed, perhaps at meetings. For a few years, I needed a break. I disengaged but soon returned to the fold. I coordinated facilities and the program for the 2006 HD World Congress in Vancouver. For that, I organized special events such as dinner catered by the Musquem Reserve. I hired my neighbour’s son to babysit! I took over selling Amaryllis from Norma Stevens about ten years ago; the Amaryllis campaign is possibly the most work of any of the initiatives I have led. For a few years—possibly ten—I have helped organize our annual hike
What have been some of the benefits of volunteering?
Benefits have definitely been the conferences, both medical and others, which I have attended. I gained so much knowledge from these opportunities. I have also appreciated the sense of community and the many good and dedicated people I have met. Since the 1980s, I have participated in research. Having two “normal” PET Scans with my sister, who died of HD last year, gave us two years each time to be free of daily speculation.
Have there been any memorable highlights from your time volunteering?
Just one of the memorable highlights has been meeting Dr. Michael Hayden several times. I have taken away optimism from each meeting, as well as gaining inspiration about actions we can pursue.
Do you have a message for the Huntington disease community, or to someone considering volunteering for the cause?
My message is “keep on trucking.” The layers of the onion surrounding a treatment to stop or delay the progression of HD are gradually peeling off due to much hard work. Persevering at volunteering has also helped me, personally.
