The Huntington Society of Canada (HSC) and Ottawa-based social media company Shared have jointly launched the “One Extra Push” campaign to raise awareness about Huntington’s disease (HD) in Canada. Shared took up the challenge in honor of Amanda Munro, one of its employees, whose mother has HD.
One Extra Push encourages donations and the sharing of an awareness video on social media.
“The first time I ever heard of HD was when my mother was diagnosed,” Munro, 30, said in a press release. “Talking about it with friends was difficult. Not only is it not overly relatable, but people simply don’t know much about it. It became my secret, but over time I began to ask, if people weren’t aware of the disease, is it because not enough people are talking about it?”
Shared CEO Jordan Nabigon said the company’s goal is to help share stories that create a conversation.
“When one of our employees opened up about this private side of her life, it touched our staff in a way we didn’t expect and started a bigger discussion around the cards we’re dealt in life and how we choose to deal with adversity,” said Nabigon.
Huntington’s causes a progressive loss of control over movements and emotions; patients also lose their memory and ability to make decisions. HD is said to be like having ALS, Parkinson’s and Alzheimer’s all at once.
In Canada, one person in 7,000 has HD, an inherited brain disorder caused by a defective gene. The child of someone with Huntington’s has a 50 percent chance of developing the disease, which usually strikes between the ages of 30 and 50. Roughly one in every 5,500 persons is at risk of developing the incurable disease.
“Helping others understand Huntington disease and finding answers for HD and other diseases like ALS, Parkinson’s and Alzheimer’s are key objectives,” said Bev Heim-Myers, CEO of the Huntington Society of Canada. “The more people that are aware of HD and the impact it has on so many families, the more resources we will be able to generate for research and family services. We are so thankful to Amanda for sharing her story and to the team at Shared for their generous support of this campaign.”