Every May the world comes together to light up communities in blue and purple for Huntington disease (HD) and Juvenile Huntington disease (JHD) awareness.
But how did the movement of #LightItUp4HD begin?
It all started with Jamie Walters, a volunteer from Guelph, Ontario. Jamie had seen a friend in Ohio light up a building near her in blue and purple and liked the public approach this movement took on raising awareness. He wanted to bring this movement to Canada in a big way – with the CN Tower in Toronto.
“You have to go big or go home to start something like this,” says Jamie.
He did his research, found contacts and discovered the process that needed to happen to make this a reality. He continued following up with his new contacts for months, until finally his request was approved.
When the sun set on May 4, 2015, hundreds of thousands of Canadians saw the CN Tower light up in purple and blue. And our HD community lit up with pride.
From there, the campaign was born.
For Jamie, Light It Up 4 HD and May Awareness Month is about educating people about HD and raising the awareness that HD needs. He wants to create an understanding in people about what HD is and the effects it has. Not just on the person with HD, but the rippling effect it has through their family and friends as well.
“People need to know about this fatal, incurable disease,” Jamie says. “People don’t know what happens behind the scenes of HD, but they should. We need to get the word out and create more awareness.”
Participating in Light It Up and May Awareness Month may not seem easy, but it just takes time, persistence and creativity.
“You just need to stick with your follow ups. Don’t sit back and wait, continue to pursue them,” Jamie advises. “Whether it is somewhere big like the CN Tower or just your local government buildings or a small nearby restaurant, it all helps. Think outside the box and start the conversation.”
And Jamie has done just that. Thanks to his hard work and dedication, Light It Up 4 HD now includes close to 100 participating sites annually. These sites are across Canada but also across the world in Australia, Ireland, Germany, Spain and more.
“The worldwide HD community and my friends across the globe have put in so much effort to participate,” reflects Jamie. “I am so thankful and proud. HD awareness is being raised more globally than ever before.”
Jamie and the Huntington Society of Canada would like to thank all of the dedicated Light It Up and May Awareness volunteers around the world for your support and involvement.
Click here to see all of the sites participating in #LightItUp4HD this year!
Click here to see everything we’re doing to celebrate Huntington disease Awareness Month.