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In the Know – August 2019



Details Emerge of First Huntington’s Disease Gene Therapy Clinical Trial 

(HD Buzz: July 17, 2019)

At the recent Huntington’s Disease Society of America annual convention in Boston, MA UniQure announced crucial details of the planned clinical trial for its experimental therapy, AMT-130.

Huntington’s Disease Patients Have Difficulty Recognizing Mental States of Others, Study Reveals

(Huntington’s Disease News: August 13, 2019)

Patients at a pre-symptomatic stage of Huntington’s disease have marked difficulties recognizing and understanding negative and neutral mental states of other individuals, regardless of gender, a study has found.

Insights on Timing of Huntington’s Disease Onset

(Medical Express (Cell): August 8, 2019)

New research results published in the journal Cell, call into question an accepted theory about the timing of HD onset.


HSC Launches Online Support Group for Those At-Risk for HD

(August 7, 2019)

The Huntington Society of Canada is very excited to announce the beginning of a new service:  an online support group.

As this is an initial step into virtual support, we have decided to start with an at-risk group as our pilot group. We anticipate a few different groups to begin following the completion of this group and its evaluation.

Transitioning to Long-Term Care Fact Sheet Released

(HSC Website, July 2019)

Most people wish to live in their own homes as long as they can. With increasing care needs, however, attempting to live at home can become extremely stressful and challenging, both for the person who is ill, as well as for family carers. The emotional and physical health of the entire family unit can be affected.


HDYO Inaugural Young Adult Congress in May 2020 Announced

(HDYO News Release)

The Huntington’s Disease Youth Organization (HDYO) will hold the world’s first International Young Adults Conference for 18-35 year-olds impacted by HD in Glasgow, Scotland from May 9-11, 2020.


Brewed Awakenings Raising Money, Awareness for Huntington’s

( August 13, 2019)

Brewed Awakenings is offering any size coffee or tea for $2 on Thursday, with all proceeds going to the Huntington Society of Canada.


Registration Now Open for YPAHD Days – Nov. 16, 2019

Young People Affected by Huntington disease (YPAHD) Day is a one-day conference in Calgary, Toronto or Halifax, designed specifically for youth affected by HD (14-35 years of age). Learn about genetic testing, family planning, caring for someone with HD, navigating relationships, think about event planning during the round table discussions and more…!

2019 Community Education Forums

The Huntington Society of Canada invites you to attend its annual Community Educational Forum for presentations on research and caregiving. Generously sponsored by Roche, Wave Life Sciences and uniQure.

Every other year, HSC provides a live forum wherein patients and carers can meet to learn about the most recent updates in HD, network with other patients and perhaps most importantly, have the opportunity to have their questions answered by leading professionals who specialize in HD.

For more information and to register for your local CEF, click here.


If you can’t attend a local CEF in person, our CEF Virtual Day will be held on November 2, 2019. More details to come!


There are many events going on across Canada all summer to raise awareness and support for Huntington disease.  Click here and check back regularly to find out what is happening in your area!


2019 Amaryllis Campaign

Have you purchased your Amaryllis yet for the 2019 Campaign? We plan to sell out of bulbs again this year and are encouraging people to get their orders in! If you have never sold Amaryllis before, and would like find out more about this rewarding opportunity to raise funds for HD while inspiring hope in people’s homes, visit

To order your Amaryllis, or to reach out with any questions about the Amaryllis Campaign or how to become a seller, visit our website at, email us at or call 1-800-998-7398. Orders can be made at any time, with delivery dates from October 2 to December 6, 2019.

Thank you for your continuing support and all you are doing to help us Inspire Hope!

Champion of Hope

Did you know that a donation of $30/month enhances direct support services (including counseling, research and recreational programs) for someone with HD for a year? Click here for more information on how to become a monthly donor today!

A Legacy of Strength, Courage and Grace 

You can purchase a beautifully designed t-shirt in memory of Victoria St. Amand. The t-shirts are being promoted to continue Vicki’s legacy of raising funds for HD research and services. The t-shirt will be mailed to you for a donation of $40, which includes shipping.

You can make a donation and order online by clicking here.

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