By Joan Callum, HSC Edmonton Chapter president
April 21, 2016
Huntington disease is hard. I see the devastation it has not just on my husband and son, but on all our family members. It starts okay, and you think you can handle it. But as it goes on, it gets very difficult. It’s a very long, slow, devastating disease.
I really hope that they find a cure or at least a treatment, so we wouldn’t have to worry any more about whether the kids are going to get it. It would take away so much stress.
Each year the Edmonton Chapter raises thousands of dollars for research and family services, but one of the problems we run into is lack of awareness. When I talk about Huntington disease, people say, “What’s that?”
I really think that if people knew more about it, we would have an easier time getting funding. People are aware of other diseases like cancer, Alzheimer’s and Parkinson’s, but they’re not aware of HD.
That’s why I do a lot of talking about Huntington disease. I talk to people I know. I talk to people I don’t know. I talk to medical students in the neurology program so that they understand the caregiver’s side of it.
That’s also why we’re lighting up Edmonton’s High Level Bridge in blue and purple on May 21st. When they lit up the CN Tower with the Huntington disease colours last year, I thought, why not the High Level Bridge? The City installed an impressive high-tech lighting system in 2014, and because the bridge is high above the North Saskatchewan River, you can see it from all around.
We’re also holding a fundraising walk and a BBQ in May, but this is the first time we’re going to #LightItUp4HD. I think it’s going to be a great experience.
To see all the sites lighting it up this May, click here.