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In the Know – December 2018

VOLUME 13, ISSUE 12

 

RESEARCH NEWS

Advances on many fronts in the battle against the protein that causes Huntington’s disease
HDBUZZ – December 4, 2018

We’ve had a run of exciting updates from Ionis and Roche/Genentech about their program to test a drug that lowers production of the huntingtin protein – but they’re no longer the only game in town. Recently several other players – including Wave Life Sciences, PTC Therapeutics, and Voyager Therapeutics, have made big announcements about their own huntingtin-lowering programs. There’s a lot happening, and HDBuzz is here to help untangle all these approaches. Click here to read the full article.

COMMUNITY NEWS

Amaryllis Flowers for the Huntington Society of Canada
RogersTV – December 7, 2018

Valerie Nabb representing the Ottawa Chapter of the Huntington Society of Canada tells us more about Huntington Disease and the importance of the Amaryllis fundraiser. Click here to watch the full interview.

Congratulations to the 2018 Canada Cares Award Winner – Stephanie Rees!
HSC Focus – December 10, 2018

When Stephanie Rees saw a post on HSC’s social media about the 2018 Canada Cares awards, she had mentioned the post in passing to her husband. Little did Stephanie know, her husband went and nominated her for the award for her caregiving abilities – and she won! Click here to read the full post.

Huntington Disease Youth Mentorship Program
Zeal Access – December 3, 2018

The Huntington Society of Canada’s Youth Mentorship Program provides support for young people facing the many everyday challenges of being part of a family affected by Huntington disease. Jody Mitchell, the daughter and granddaughter of persons with Huntington disease, talks about the benefit the program has brought her as both a mentee and a mentor. Click here to watch the full interview.

KEEPING CANADIAN WORKERS HEALTHY: WITH OR WITHOUT A CHRONIC CONDITION
Zeal Access – November 26, 2018

Health Partners brings together employers and various patient focused charities for the purpose of helping to keep Canadians as healthy as possible in the workplace. CEO of Health Partners, Eileen Dooley talks about the organization and the millions of dollars they have raised for the 16 charity members. Click here to watch the full interview.

Young People Caring for a Huntington Disease Parent Worry ‘This Could Be Me’
Huntington’s Disease News – November 29, 2018

Taking care of parents with Huntington’s disease evokes thoughts of “this could be me” in young caregivers and affects their planning for predictive genetic testing, a study shows. Click here to read the full article.

HSC NEWS

FAMILY SERVICES STAFF ANNOUNCEMENTS: HSC HIRES NEW FAMILY SERVICES TEAM MEMBERS

HSC is happy to announce the appointment of Jenni Aitken as the new Family Services Worker in the Victoria, BC and the appointment of Natasha Kukolj as the new Resource Centre Director for Southwestern Ontario. Click here to read the full announcement.

AMARYLLIS

We are thrilled to announce a complete sell-out of the 2018 Amaryllis Campaign with over 21,000 Amaryllis bulbs growing and inspiring hope across Canada. A sincere thank you to each and every one of our dedicated volunteer sellers who helped exceed our goal of raising over $115,000 to fund services for families affected by Huntington disease and to support HD research.

As your Amaryllis starts to grow, please send in your photos! Our 2018 Amaryllis Photo Festival is in full swing and we want to see yours. Send those photos to amaryllis@huntingtonsociety.ca or share them on social media with #HSCAmaryllis. Click here for more information about the contest.

Champion of Hope

Did you know that a donation of $30/month enhances direct support services, including counseling, referrals and recreational programs for one person with HD for a year? Click here to learn more about our Champion of Hope monthly giving program.

       

 


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