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In the Know – July 2019

VOLUME 14, ISSUE 7

RESEARCH NEWS

SickKids Scientist Calls for National Strategy to Get Genome Sequencing Covered in Canada

(Gananaque Reporter: June 16, 2019)

The U.K. is rolling out a program in which all seriously ill children without a diagnosis will be able to get a full genetic work-up for themselves and their parents, for free.

HDSA Video: Ed Wild and Dr. Jeff Carroll

(HDSA Conference: July 1, 2019)

Dr. Ed Wild (National Hospital for Neurology and Neurosurgery, London, UK) and Dr. Jeff Carroll (Western Washington University, USA) present an HD research “year in review” at the recent HDSA conference in Boston, MA. In it, they draw interesting comparisons between the entirety of the HD research landscape and the infinity stones in the movie Avengers: End Game.

*Audio Required*

For more HDSA conference videos, including a conference synopsis, click here.

HSC NEWS

HSC Launches Closed Facebook Support Group

(HSC Website,  June 28, 2019)

In this online group you will gain access to an active group of people in Canada living at-risk for, living with or caring for someone with Huntington disease (HD).  Individuals in this group will be asking questions, answering your questions and sharing stories of hope and support.

‘Driving and HD’ Fact Sheet Released

As we get older and our health changes, our ability to drive safely can be affected. Over time, every person will lose the ability to drive. For people affected by HD, this will happen earlier.

HD COMMUNITY NEWS

HDSA and CHDI Foundation Launch “HD LEGACY”

(CHDI Foundation News Release: June 20, 2019)

In response to a growing need to study exactly what Huntington’s disease (HD) does to the human brain, the Huntington’s Disease Society of America (HDSA) and CHDI Foundation are pleased to announce a new collaboration called HD LEGACY to support brain and other organ donations from families affected by HD who would like to make a vital contribution to research.

For information on brain and tissue donation in Canada, please see the HSC fact sheet.

HSC EVENTS

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.

COMMUNITY EVENTS

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!

HOW YOU CAN HELP

2019 Amaryllis Campaign

Congratulations to Anna Watson, the winner of our 2019 Amaryllis Campaign Early Bird Contest! Anna won an Amazon Kindle and a copy of Julie Lawson Timmer’s extraordinary book, Five Days Left. Thank you to everyone who participated by purchasing their bulbs early this year. For those of you who haven’t yet purchased your Amaryllis bulbs, it’s not too late! If you have never sold Amaryllis before, it’s a wonderful opportunity to raise money and awareness for HSC by selling these beautiful flowers.

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 www.inspirehope.ca, email us at amaryllis@huntingtonsociety.ca 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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