2020 Postcard from Palm Springs
Highlights from the 2020 CHDI HD Therapeutics Conference are now here! This year’s Postcard covers HTT-lowering therapeutics, including an
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Huntington Heroes National Virtual Walk Headlines Awareness Month
Spring is most definitely in the air,putting some pep in our step… and that’s a good thing, because it’s time to get excited about the National Virtual Walk! The event headlines May Awareness Month, which will be full of lots of other fun and informative initiatives, including Light It Up 4 HD.
It likely comes as no surprise that we couldn’t count on being able to hold large, in-person events across the country because of COVID-19. “Because COVID” has become the reason for so many changes, the slogan should practically go on a T-shirt. But no – we have a much better T-shirt for you, and that’s the one associated with the Huntington Heroes National Virtual Walk.
Once again this year we invite Canadians to register, fundraise and walk in their own neighbourhoods on May 29-30 as part of the Huntington Heroes National Virtual Walk. Sign up here: https://p2p.onecause.com/hscnationalwalk.
There are some local chapter events scheduled, that, although virtual, allow participants to walk as part of a team and take part in specific initiatives and activities. You can look for local events on the National Virtual Walk page. And if those days don’t work for you, feel free to walk when convenient for you – that’s the beauty and flexibility of a virtual event.
“Although pivoting away from large gatherings means fewer hugs, the decentralized approach allows people to participate no matter where they live,” says Kelsey Laidlaw, Community Events Coordinator with Huntington Society of Canada. “There are still wonderful opportunities to connect with others from the Huntington disease (HD) community and raise broader awareness; these events just look slightly different.”
Lesley Nantel, president of our Vancouver chapter, agrees. “With the 2020 virtual event, we were able to reach a lot of people that maybe wouldn’t have participated normally,” she says. That included one woman from a small community in Northern B.C. Until she heard about the walk, she didn’t realize anyone else in the province had HD.
At the National Office in 2020, our team pulled out all the stops to preserve as much of the energy and camaraderie of traditional walks and runs as possible. We provided lawn signs that folks decorated with streamers and balloons to raise awareness. We ran a costume contest looking for the best-dressed superhero. We shared warmup and cool-down videos led by our amazing volunteers Natalie Marnica and Patsy Szabo.
Meanwhile, local chapters put their own stamp on things. In B.C., that included a 24-hour online auction, door prizes during a Facebook Live event, and a pre-recorded performance by Canadian country/rock band Taylor-Rae and the Backseat Drivers. “It was awesome,” says Lesley. “Everybody was very adaptable and very creative.”
All told, participants raised more than $176,000 for HD research and family services in 2020 – a sum matched by an anonymous donor – and clocked a staggering 2,200 kilometres. Wow! Thank you to everyone who stood together by walking alone. As always, we owe this success to your hard work and generous support and hope that we can go even bigger and better with our 2021 offerings.
May Awareness Month and the Huntington Heroes National Virtual Walk accomplish so many goals. The funds raised from the National Virtual Walk go to support education, research and counselling. Awareness Month initiatives will reach out to inform, educate and engage with a wider audience than ever before, connecting them to the cause and the community. Light It Up 4 HD shows just how much spirit and hope the HD community has. We invite you to follow us on our social media channels and sign up for our e-newsletters for the latest on all of these initiatives.
These are unique times. We’re asking everyone to dig deep to once again find the energy, rekindle the spirit, and make May Awareness Month 2021 and the Huntington Heroes National Virtual Walk more enthusiastic, generous and beloved than ever before.
“With this organization and this community, it really is one big family,” says Kelsey. “So whether we’re walking alone or not, we’re still all in this together.”
Download the 2021 Spring Horizon newsletter – click here.