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IN THE KNOW – MAY 2018

Volume 13, Issue 5

 

MAY AWARENESS NEWS

May Awareness Month Profiles

This is a time where volunteers are spreading the word, educating Canadians about Huntington disease (HD) and how they can help the thousands of Canadian families affected by this devastating disease, through several movements. This month, we are profiling some of our volunteers across Canada who have helped to make May Awareness Month as effective as it can be. Click here to read our volunteer’s stories.

Light It Up 4 HD

Let’s light up the world in purple and blue, for Juvenile Huntington disease (JHD) and Huntington disease (HD), throughout the month of May 2018! The more days we can light up, the more awareness we will bring to HD.  Click here for a full listing of sites lighting up near you.

Flag Raisings

As part of May awareness, volunteers across Canada request that buildings in their community fly the Huntington Society of Canada flag for a period of time during the month of May. The flag raises awareness and honours those affected by the disease.  Click here for a full listing of flag raisings near you.

Huntington Disease Awareness
YourTv Sarnia – April 29, 2018

Celine Payne’s Mom has an advanced form of Huntington Disease which has left her requiring constant care. Celine raises awareness & money so that other families won’t have to live with the consequences of this debilitating genetic disorder. Click here to watch the video clip

Raising Awareness
The Sudbury Star – April 24, 2018

In many cases, communities in Northern Ontario can be isolated from a variety of goods and services the rest of us tend to take for granted, including medical specialists. Click here to read the full article.

May is Recognized as HD Awareness Month
My Timmins Now – April 30, 2018

May is being recognized as Huntington’s Disease Awareness Month. A group of volunteers looking to create a Huntington Disease Society chapter in Timmins will be spreading awareness about the disease and raising money for a cure all month. Click here to read the full article.

HSC NEWS

Waterloo Woman Releases Original Song as Huntington Fundraiser
CBC News – May 11, 2018

Huntington disease has taken a lot from Vicki St. Amand: her ability to move freely, speak easily and live independently – not to mention the lives of her mother and sister. But the degenerative brain disorder has also given her something: a voice, and one that she’s sharing with the world in song. Click here to read the full article.

Champion of Hope

Did you know that with just $10/month you could provide educational materials and consultations for one year, to individuals providing care to those with Huntington disease? Click here to learn more about how your monthly support assists the HD community.

Amaryllis

The 2018 Amaryllis Campaign will be launched on May 21. Click here to learn more about this year’s campaign and the Early Bird Contest.

GENETIC FAIRNESS

Door Will Open to Genetic Discrimination if Act Protecting Canadians is Overturned, Genomics Expert Says
CBC – May 14, 2018

Canada’s Genetic Non-Discrimination Act is being challenged by the province of Quebec. Medical researcher Yvonne Bombard is worried about a future where Canadians could face increasing discrimination based on their genetic profiles. Click here to read the full article.

RESEARCH NEWS

The Huntington Society of Canada (HSC) Answers Questions Regarding the April 24th IONIS-HTTRx Announcement

On April 24th, 2018, Ionis Pharmaceuticals made an announcement about the Phase 1/2 clinical trial of their huntingtin-lowering drug, IONIS-HTTRx (RG6042). The news was shared publicly in a press release and the data was highlighted at the American Academy of Neurology (AAN) Annual Meeting. HSC has compiled some frequently asked questions and answers to help understand this information. Click here to read the full FAQ.

Exciting Experiments in “Open Science” by Huntington’s Researchers
HDBuzz – April 20, 2018

Drs Rachel Harding and Tam Maiuri are taking a leap of faith to make discoveries in Huntington’s Disease (HD) research swift and open to all. They are publishing their lab notes on fundamental HD research online in real time, at the risk of losing credit for their work. As a result, they hope to speed the path of discovery to more effective HD treatments. Click here to read the full article.

New Collaboration Seeks to Speed Huntington’s disease Drug Licensing
HDBuzz – May 9, 2018

Recently the Critical Path Institute announced a new effort – the Huntington’s Disease Regulatory Science Consortium, or HD-RSC. This collaboration with many international partners aims to speed the development of new HD treatments. What’s all this about, and how could it help HD patients? Click here to read the full article.

CHDI Foundation Joins PTC’s Quest to Develop Huntington’s Therapies
Huntington’s Disease News – April 12, 2018

CHDI Foundation has teamed up with PTC Therapeutics to try to advance PTC’s work on small-molecule compounds that can reduce the production of huntingtin, the protein responsible for Huntington’s disease. Click here to read the full article.

ENROLL-HD –  April 2018

Click here to check out the latest updates in Enroll-HD’s quarterly bulletin.

       


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