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In the Know – February 2020

VOLUME 15, ISSUE 2

OF INTEREST

Québec Couple Pleads for IVF Funding to Help Them Conceive a Baby Without HD

(CBC News: Feb. 5, 2019)

Joey Lapointe and his wife, Anna Lambert, are upset and frustrated they can’t get a tax break for in-vitro fertilization to make sure their baby is born without the genetic mutation that leads to Huntington’s disease.

May is HD Awareness Month!

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.

HSC NEWS

We Have Moved!

The HSC national office has moved to Waterloo, ON. Now is a great time to update our mailing address in your records.

Our phone lines, email addresses and website all remain as they were. It’s business as usual!

Update on Recent Changes in Family Services

Graeme Wood,  RCD in Southwestern Ontario,  will now be working full time and also providing social work support to the areas of Cambridge, Kitchener, Waterloo and Guelph. These regions have been permanently added to the Southwestern Ontario Resource Centre region. Graeme can be reached at gwood@huntingtonsociety.ca or 1-855-660-0670.

Ekta Hattangady, RCD in Halton/Peel has moved on from HSC, please join me in wishing Ekta all the best! HSC is in the process of hiring a new full time RCD to cover the Halton/Peel, Hamilton, Niagara and St-Catharines regions. This new Central Ontario RCD will provide outreach and support groups to families in all of these areas. We are currently recruiting for this role, so stay tuned! In the interim, please contact Angèle Bénard, National Director of Family Services with any questions or support needs. Angèle can be reached via email at abenard@huntingtonsociety.ca or via telephone at 1-800-998-7398, ext. 132.

2019 Amaryllis Photo Festival Voting Now Under Way!

Vote on your favourite Amaryllis picture, as submitted by our community!  Voting will remain open until 5 p.m. on Feb. 28, 2020.

Winter 2020 Horizon Now Available

We are pleased to bring you a new edition of the national newsletter of the Huntington Society of Canada (HSC), Horizon.

This issue includes an interesting article about the work of Dr. Galen Wright at the University of British Columbia.  Dr. Wright is studying how a subtle difference in the Huntington disease (HD) gene mutation can make a big impact on age of onset of HD.  As well, we check in with Dr. Dale Martin of the University of Waterloo who is scrutinizing drugs that have already been approved for other diseases to see if they can promote autophagy, which, as you’ll read is an important cell function that the mutant version of the HD protein can adversely affect. We also profile our new HSC board chair, Mack Erno and his HD Ride 4 a Cure in northern Alberta, as well as his journey in starting a family.

Last year was a busy year for HSC. You will have the chance to read about our Community Education Forums, our regional YPAHD Days and our Youth Mentorship Program. We have also included an update on the Genetic Non-Discrimination Act, a winter events calendar and inspirational stories celebrating some of our incredible volunteers and donors.

HSC Surveys Now Open

Please tell us what you think and complete our two online surveys, the results of which will help to guide us in planning future issues of Horizon, as well as improve the efficacy of our chapters.

Click here to visit the landing page for both surveys.

HSC EVENTS

Tickets Now on Sale for Toronto Sports Getaway Raffle!

Support the Huntington Society of Canada (HSC) by participating in this year’s Sports Getaway Raffle and help raise money for family services and research towards a cure. Enter to win one of our amazing price packages for a fun weekend getaway in Toronto! Each prize is valued over $2,000!

Save the Date!  HSC National Conference

We are looking forward to the next National Conference in 2020 in Niagara Falls, ON! Check back often as more details are confirmed and look for our snappy new conference logo on future communications!

HOW YOU CAN HELP

Champion of Hope

By joining our Champions of Hope monthly giving program, you support individuals and families affected by Huntington disease every single day. Our Champions of Hope provide a vital and vibrant support network, and your gifts go to work in your community and across Canada. To become a monthly donor visit click here.


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