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In the Know – September 2019

VOLUME 14, ISSUE 9

RESEARCH NEWS

Hope for Some Devastating Neurological Diseases

(Niagara This Week: Sept. 9, 2019)

For example in the case of HD, by blocking the molecular message, in the form of messenger RNA (mRNA), between the mutant gene in the nucleus and the ribosome in the cytoplasm, it’s possible to block production of the related mutant protein and possibly the disease So far, the initial data in patients with HD look promising

HD COMMUNITY NEWS

HDYO International Young Adult Congress – Registration Now Open

(HYDO Website: Sept. 9 , 2019)

Registration is now officially open for HDYO’s Intl Young Adult Congress taking place in Glasgow Scotland, May 9-11 2020.

Book on Huntington disease Wins global Award

(Times of Oman: Sept. 2, 2019)

A book that was jointly edited by a professor at Sultan Qaboos University and describes types of food that help patients who suffer from Huntington’s Disease has won an award at the Gourmand World Cookbook Awards.

SUPPORT AND PROFILES

Go-Karts to Race Sunday as Part of Fight Against Huntington disease

(Windsor Star: Sept. 6, 2019)

“It’s probably one of the worst ones because it’s like three bad diseases in one,” said Paul Bateman, president of the local chapter of the Huntington Society of Canada.

Driving Laps for Research, Support

(Winnipeg Free Press: Sept. 9, 2019)

Vern Barrett isn’t a racecar driver but he is the driving force behind an annual fundraiser for Huntington’s disease services and research.

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.

Can’t Attend a CEF in Person? Register for our Virtual CEF!

At our Virtual CEF on November 2, 2019, join George Yohrling, Senior Director, Mission and Scientific Affairs, Huntington’s Disease Society of America, as we explore “Hope and Progress in the Huntington Disease Clinical Pipeline”. Find out how trials are going, what’s next, and how together, we can create a new future where HD is less of a problem for those affected.

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!

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

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 www.huntingtonsociety.ca/amaryllis-campaign/.

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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