May 12, 2016
There are going to be fireworks on Erin Wade’s 24th birthday. Plenty of family and friends will gather to celebrate with her. And, oh yeah — Niagara Falls will be lit up blue and purple in her honour.
Erin has Juvenile Huntington disease (JHD). And her mom, Cindy Moore, is on a personal mission to raise as much awareness about the disease as possible through a pie-in-the-face campaign, fundraisers, media interviews and more.
So when HSC encouraged volunteers to light up landmarks in the Huntington disease (HD) colours (blue for HD, and purple for JHD) to mark May as Huntington Disease Awareness Month 2016, Cindy jumped at the invitation. She saw how much impact lighting up the CN Tower had last year, and as far as she’s concerned, the bigger the better. “Make it worldwide. That’s what’s going to make a difference,” she says. “You’ve got to try to reach everyone.”
Cindy and Erin live in Brockville, Ontario, but they set their sights on illuminating one of Canada’s biggest natural attractions, Niagara Falls. Lighting up Niagara Falls would reach thousands of visitors from around the world. On top of that, the Falls hold special significance for Erin, who used to visit them with her dad before he died from HD.
Cindy hopped on Google, tracked down the appropriate contacts, and sent in her request and family story. Six months and many email reminders later, the proposal was approved. “It’s a matter of diligence and follow-up,” she says. “If you just ask and let it go, you’re not going to get anywhere.”
The result is going to be one heck of a birthday celebration for Erin — and awareness about HD on a spectacular scale. “She’s thrilled to death,” says Cindy. “Thrilled.” So are we!
From all of us at HSC, happy birthday wishes to Erin and a huge thank you to Cindy for all her amazing efforts. If you’re in Niagara Falls on May 18th, be sure to watch at 10:00 pm when they turn blue and purple to mark HD awareness month! Otherwise watch your social media channels as Cindy and Erin will be sharing photos.
For a list of all the sites lighting it up this May, please visit www.lightitup4hd.com.
To read more about our spring direct mail campaign, featuring Erin & Cindy, and how you can make a difference this Huntington Disease Awareness Month, click here.