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May 2020 is HD Awareness Month!

April 6, 2020

Ours is a different world this April as countries around the globe implement various social distancing measures to help stop the spread of COVID-19 and #flattenthecurve.

As many of you likely know, the Huntington Society of Canada (HSC) has implemented a number of practices to help keep our staff, volunteers and the Huntington disease (HD) community that we serve, safe.  You can read more about these at

HSC continues to follow the regulations in place at the federal, provincial and municipal levels. Social distancing and self-isolation are a critical part of controlling COVID-19. Unfortunately, this means that cities, towns and other municipalities are discouraging public gatherings, which includes the flag raisings normally planned as part of HD Awareness Month. At this time, HSC is asking all volunteers working on behalf of HSC to withdraw any flag raising or other public gathering requests associated with HD Awareness Month.

It is also important to remember, as we ask for sites to #LightitUP4HD, that many municipalities are currently overwhelmed with demands on their public health units and other pressing concerns around COVID-19 containment. With limited staff available in municipal offices it is difficult to secure commitments for  #LightItUp4HD requests. At this time, HSC encourages volunteers to continue with requests but to be mindful that other priorities may be more pressing in May, 2020. Do not be disheartened with lack of response.   This is a disruptive year and any site that we manage to get on board is a success story.

Consider May Awareness Efforts at the Residential Level

While the number of landmarks participating in #LightItUp4HD may be lower in 2020, here are some local ways (with social distancing in mind) that you can create awareness about HD at home:

  • Create posters for windows and doors
  • Install purple or blue porch/Christmas lights
  • Hang home-made HD ornaments on a tree in your front yard
  • Draw on your sidewalk or driveway with sidewalk chalk
  • Post on social media and include pictures of the above – challenge friends to participate
  • Consider a Facebook fundraiser during May to raise awareness and funds for valuable HSC work such as family services outreach and research support

We can still make HD Awareness Month a success – even if it’s virtual – in May 2020!

Thank you for what you do.  Remember to stay safe.

Bev Heim-Myers
CEO (Interim)
Huntington Society of Canada

We are gearing up for yet another wonderful May Awareness campaign – and we can’t wait to see what happens this year! Let’s make 2020 the biggest and best year so far! Since 2015, volunteers from across Canada have been working to illuminate various buildings, monuments and statues during the month of May to raise the visibility of HD and Juvenile Huntington disease (JHD).

Thanks to the enthusiasm of the HD community and many HD volunteers, “#LightItUp4HD 2019” saw a record number of participating sites, worldwide. In Canada, 55 sites participated in #LightItUp4HD, while another 114 international buildings, monuments and other structures lit up in blue for HD and/or purple for JHD. In 2019, an international total of 169 sites participated – nearly 50 more than in 2018.

Leading up to the month of May, volunteers all across the world are tirelessly canvasing and promoting the upcoming month of awareness in every way they can. They write letters and send emails to add countless buildings to our list of #LightItUp4HD sites (to be posted to the website in coming weeks).

Don’t miss a single post, see what everyone’s posting with our official hashtag #LightItUp4HD!
For Facebook posts, click here. For Twitter posts, click here.

Let’s show the world what our global community can do!

Join this growing movement! Choose a building, monument or statue in your area.

Step 1: Email with your suggestion. Email us to with the name of the site you want to contact. We will confirm and add your site to the list. On to step two!

Step 2: Contact the building, monument or statue.

  1. Find the contact information on their website.
  2. Call or email them directly and ask what the process is to light up the building, monument or statue. If they need more information about #LightItUp4HD, you can provide them with this info package. Other materials include the #LightItUp4HD 2020 logo and another May Awareness 2020 graphic, as well as general HD materials like this poster and this brochure.
  3. Once you know the process, use this template, complete your information, and email it to the site.

Step 3: Wait for confirmation. It could take a couple of days or even up to 4-6 weeks; if you don’t hear back, don’t be shy! Go ahead and contact them again.

Step 4: Official confirmation. Some buildings, monuments or statues want official confirmation from HSC. That’s no problem just forward the request to and we will confirm you are working on our behalf. Please note: Most sites will need 3 months to prepare so, let’s start now!

Step 5. Let us know!  Review the checklist and fill out this (fillable) PDF. If you click the submit button on the PDF form, you can send it directly to our communications team by magic. That way, we can keep track of the sites across Canada and around the world.

#LightItUp4HD 2020

Since 2015, the enthusiasm of our families and volunteers has made Light It Up 4 HD a cross Canada movement. Buildings, monuments and statues across Canada light up in blue and purple during May to raise awareness for Juvenile HD (in purple) and HD (in blue) and Huntington Disease Awareness Month. In areas that don’t have a monument in their community to light up, many use blue and purple lights at their own homes.

Click here for a full list of the sites participating in #LightItUP4HD 2020 all over the world (plus a video of just “some” of the 2019 sites)! We will update this page on a regular basis leading up to and throughout May 2020.

2020 Flag Raisings and Proclamations

As part of May Awareness, volunteers across Canada also request that buildings in their community fly the Huntington Society of Canada flag for a period of time during the month of May. The flag raises awareness and honours those affected by the disease. Volunteers across Canada also strive to make HD Awareness Month official in their communities by having local government members proclaim May as HD Awareness Month. To download a 2020 proclamation form, click here.

Click here for a list of 2020 sites (updated weekly).

2020 Events

Many events are planned to happen specifically during the month of May to coincide with HD Awareness Month. Check in with us regularly as we lead into May for a full list of 2020 events.

Click here for a full listing of 2020 events!


In an effort to gain national attention for HD Awareness Month, volunteers have been working hard with us to participate in media interviews and segments across the country.

Email us at if you’re interested in sharing your story – or covering ours!

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