Joanne Kaattari

Our family is impacted by Huntington’s Disease. It’s a rare disease which makes everything more difficult. For example, your family is probably the first family with Huntington’s your doctor has ever dealt with.

Because of that, I’m always looking for support. I was amazed at CCCE’s focus on raising awareness of the value of caregivers and their needs at all levels of government. We need to hear the voices of all caregivers, like we did at the Canadian Caregiving Summit and in the Caregiver CAN group that I’m a part of. Our stories are so, so powerful, and they need to be heard.

My advocacy focus has always been local and I always use flowers because I think they’re really positive and they bring hope. The Huntington Society of Canada’s yearly fundraiser includes selling amaryllis bulbs and it’s a beautiful gift to give to people. I recently gave an amaryllis bulb to a local MP along with a personal invitation to the Canadian Caregiving Summit reception, which he attended! He told me that he gets so many invites from all kinds of groups but because I came in person with a flower, he had to come. 

With a national caregiving strategy, I really hope that caregivers finally get real recognition. Most people who aren’t caregivers don’t understand how much we do to prop up the health care system. If we could hear it even mentioned by the different ministers, that would be an important first step.