May Is Huntington Disease Awareness Month
Beka Pottery
May 1, 2017
Pictured above: Beka and her father.
It took Beka Pottery a while before she used the blood work requisition forms her doctor had given her. Understandably so, considering the stakes: the results of those tests would tell her whether she had inherited the gene for Huntington disease (HD).
Beka remembers the day her dad was diagnosed with the fatal neurodegenerative disease. She was 17. Getting the news was a painful blow, but it also went a long way in explaining her dad’s personality changes, violent outbursts and loss of balance. In the decade that followed, his symptoms got progressively worse. Today, he’s in a long-term care facility.
When Beka eventually chose to make use of those requisition forms, the results of the genetic testing confirmed her worst fear: she also carries the fatal gene and will one day develop Huntington disease. “The hardest part is not knowing when that will happen,” says the 27 year old.
Rather than sit around and wait for that day to come, Beka decided to do everything she could to make a difference. On a personal level, that translated to choosing a healthy diet, spending plenty of time at the gym and maintaining a positive outlook. “I’m very hopeful and optimistic that there will be a cure,” she says. “There is a lot of research going on, and it seems quite promising.”
But research requires funding, so Beka has got busy spreading the word. Over the years, she has educated her large network of friends and family about HD. Now, she’s going even further. On May 7th, she’ll be taking her passion to the streets of Victoria with a charity run she’s organizing to support the Huntington Society of Canada.
“The more that people know about HD, the more money that will be funnelled in for it,” she says. “I believe that creating more awareness will help towards finding a cure or some sort of help for those who suffer from Huntington disease.” Beka is motivated by the continuous support of her boyfriend, friends and family – who are also optimistic and eager in finding a cure.
The month of May carries a particular significance because it’s Huntington Disease Awareness Month. During this time, volunteers are hard at work raising awareness about Huntington disease, a rare genetic disorder that causes brain cells to die. A person with HD becomes less able to control movements, recall events, make decisions and control emotions. The disease leads to incapacitation and, eventually, death.
“It is the dedication and support of people like Beka that are the fabric of the Huntington Society. Volunteers who go above and beyond help us grow, achieve impactful results and reach our goals,” says Bev Heim-Myers, Chief Executive Officer of the Huntington Society of Canada. “We are incredibly fortunate for people like Beka and the thousands of volunteers who stand beside us and make us the best that we can be.”