June 15, 2017
What an exciting month of May for Huntington disease awareness! This past month, like every May, we celebrated Huntington Disease Awareness Month, a wonderful opportunity for those with HD to raise awareness, make connections, get support from their communities, and move forward with pride and dignity. The more people understand about the disease, whether they are learning about it for the first time or seeking specific information about certain symptoms, the more they can accept those who are impacted and extend support.
Throughout the month we also profiled some of our community members. Click on the profile below and you will be redirected to their story.
Keep reading to see some the activities that took part across Canada, and the world, to celebrate Huntington Disease Awareness Month.
CN Tower in Toronto kicked off Light It Up 4 HD on May 1st, 2017.
Started in 2015 by a volunteer, Light It Up 4 HD involves the illumination of national sites and monuments in the Huntington disease and Juvenile Huntington disease colours. What started as a singular event in Toronto (with the lighting of the CN Tower) has now grown to an international campaign with 2017 including 9 countries and 99 sites across the world! Volunteers and community members, partner organizations and families, banded together to compile a very impressive list sites including Niagara Falls, the Kelpies in Scotland, Spinnaker Tower in England and more!
Be sure to watch and share the video below recapping the sites involved in 2017.
Pope Francis Meets With HD Families
Pope Francis meeting with HD families. Photo retrieved from @HDdennomore Twitter.
On May 18, 2017, in a historic meeting that was the first of it’s kind, Pope Francis met with and addressed Huntington disease families in Vatican City. In doing so, he became the first world leader to recognize the devastating plight of those living with and affected by HD. Pope Francis was joined by families, researchers, foreign dignitaries and celebrities from across the world. The event was coined the ‘HDdennomore’ initiative (pronounced ‘Hidden No More’) to raise awareness of HD, bring HD families together, and generate action to end the stigma and shame around the disease that has persisted for generations. Learn more about the event on the official HDdennomore website, here.
In case you missed it, view a recording of the event by clicking here.
To see coverage of the event in our latest edition of In The Know, our monthly newsletter, click here.
Our 2017 PSA Campaign, What is HD?, aims to spread the word about HD and JHD to the general public. During the month of May, we launched our TV and radio ads on several local outlets across the nation to raise awareness with the general public about Huntington disease and Juvenile Huntington disease. Many of those ads are still airing on those channels to date, you can view a list of channels here. Those ads were also accompanied with testimonials from our community, including YPAHD President Jaclyn Skinner and HD researcher/Eli and the Strawman band member Dr. Tamara Maiuri. Click here to see all the testimonials.
- Know a media contact in your area? Let us know and we will send the PSA to them to share. Email us at firstname.lastname@example.org for more information and if you have any questions.
- Our PSA print ads are being shared across the country. If you’d like to see our PSA in your local paper, send this link (www.huntingtonsociety.ca/psa-campaign/) to your local media outlet and/or email us and we will add your contact to our distribution list so we can get every possible outlet engaged in HD awareness year-round!
Barb’s Ribbons of Hope
Started in 2016 by Barb Marshall, you may have seen these beautiful hand-crafted ribbons across social media or at a chapter event. This year, these ribbons were available for fundraising at chapter events and individuals could also request them. In 2016, her campaign raised $1571 – with all proceeds going to the Huntington Society of Canada. Learn more about Barb’s story and campaign by clicking here.
Chloe Angus Partners with Huntington Society of Canada
CEO Bev Heim-Myers, far left, at the May 18 event in Vancouver. Photo provided by Chloe Angus.
On May 18th, another event new to HSC took place in Vancouver, British Columbia. The Chloe Angus Design Studio partnered with HSC for an event where participants could design their own dragonfly wrap. These spirit wraps feature a beautiful dragonfly, created by Haida artist Clarence Mills, and is a symbol of both our Believe campaign and symbol of change, transformation and swiftness in Haida culture. Proceeds from the wraps goes to HSC; HD has a special place in Studio owner Chloe Angus’ heart, as her mother was diagnosed two years ago.
These wraps are still available for purchase at this link.
Learn more about Chloe Angus connection to Huntington disease here.
A huge shout out to our fantastic Huntington disease community for their tireless efforts in creating and spreading awareness this past month and every day! Thank you for all your hard work and dedication for another successful Huntington Disease Awareness Month.
*The pictures used in this post that do not belong to the Huntington Society of Canada have been credited to their original owners (or those who have posted them).