May is Huntington disease (HD) Awareness Month and volunteers are spreading the word, educating Canadians about the disease and how they can help the thousands of Canadian families affected by this devastating disease, through several movements.
Since 2015, volunteers from across Canada have been illuminating various buildings, monuments and statues during the month of May to raise the visibility of HD and Juvenile Huntington disease (JHD) with blue and purple lights, respectively. Thanks to the enthusiasm of the HD community and the many HD volunteers, “LightItUp4HD” will be coming to a site near you!
“After having the CN Tower lit up in 2015, I was asked by the Huntington Society of Canada (HSC) what I would like to see become of this,” says James Walters, Founder of the Global Huntington Association and the LightItUp4HD initiative. “I said I would love to see more buildings across Canada illuminated in 2016. And my Canadian Huntington’s family did not disappoint! In May 2016, Canada was awash in blue and purple. Then, in 2017 members of our worldwide Huntington disease families stepped up and joined us in our quest to bring HD and JHD out of the shadows and into the light.”
Volunteers have reached out to HD organizations from around the world and have invited them to “LightItUp4HD”. Along with almost 50 sites in Canada (and counting), Australia, England, Ireland, Mexico, Northern Ireland, Norway, Spain and Wales are just some of the countries working to “LightItUp4HD” this May. Many cities here at home have also made proclamations to declare May as HD Awareness Month. In most cases, this is coupled with a flag-raising event outside the local city hall or civic centre.
The HSC hopes that this month’s events will help to educate Canadians about the disease and its impact – so that they are more likely to extend support. Together with its fantastic base of volunteers, the HSC invites Canadians to learn more about Huntington disease and Juvenile Huntington disease.
“Today, we as a global family are stronger than ever,” adds Walters. “I’m humbled by the tireless efforts of thousands of our JHD/HD families, volunteers and organizations who put in endless hours promoting our cause. I’m also thankful to the HSC for allowing me to this opportunity to express my heart felt thanks to each and everyone who has joined us for #LightItUp4HD.
This movement is made possible by volunteers like Melissa Kozak, who worked tirelessly to canvas Canadian sites to #LightItUp4HD. Melissa helped to coordinate the campaign by reaching out to past volunteers and sites to participate again in 2019, as well as new sites to gain more participants.
“I love the idea of Light It Up because it’s something that has the ability to unite all of us affected across the country and even across the world,” says Melissa Kozak, national Light It Up 4 HD volunteer. “I can be looking at a monument that’s lit up in Toronto and know that my sister is looking at another monument that’s lit up in Vancouver. It’s so very heartwarming.”