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In the Know – April 2018

Volume 13, Issue 4



Join the HD Flash Mob!

A local BC volunteer is organizing and HD Flash Mob to raise awareness for Huntington disease. Community members are encouraged to follow the dance routine, record themselves dancing and send the video via email to be included in the Canada-wide video that will be shared in May! Click here to read the full instructions on how to get involved.

Volunteer Week Profiles
HSC Blog – April 15 – 21

National Volunteer Week (NVW) is April 15 – 21, 2018. This is a time to celebrate and thank all of the extraordinary volunteers in the HD community! To celebrate, we will be sharing profiles of some of our volunteers on the HSC blog all week. Click here to read our volunteer’s stories.

Daddy and Daughter Princess Ball Supports Charity
Niagara Falls Review – April 8, 2018

Colin Dyer joined other fathers, all dressed in suits and ties, as they entered with their daughters dressed as princesses or favourite outfits for the first ever event in Niagara in support of the Huntington Society of Canada. Click here to read the full article.

After Mom Diagnosed, Astros’ Joe Smith Faces 50/50 Future with Huntington’s Disease
ABC13 – March 23, 2018

Former Toronto Blue Jays Pitcher who is now a member of the Houston Astros spoke with the local Houston media about a passion and a purpose that’s deeply personal. His mother has Huntington’s disease. Click here to read the full article.

Family Services Staff Announcements: HSC BC Resource Centre Welcomes New Director

The Family Services Team at the Huntington Society of Canada is pleased to welcome Rhonda Romolock, BSW RSW as the new Resource Centre Director in British Columbia. Rhonda is currently the HSC Social Worker in Vancouver. Click here to read the full announcement.

Planning for End of Life
The Spec – April 11, 2018

April 16 is Advance Care Planning Day. It’s not an occasion many people recognize, but it is a valuable opportunity to start a conversation with your family. Advance care planning is about reflecting on and communicating personal care preferences. The goal is to help your loved ones understand your wishes in case you become incapable of making medical treatment decisions. Click here to read the full article.

Champion of Hope

Did you know that a donation of $30 a 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.


Stay tuned as the 2018 Amaryllis Campaign will be launched in May and information about the Early Bird Contest will be announced soon!


The Structure of the Protein That Causes Huntington’s Disease, Revealed
HDBuzz – April 3, 2018

The cause of Huntington’s disease has been known since 1993, but the physical structure of the healthy huntingtin protein proved difficult to discover until now. German scientists have now revealed the shape of the huntingtin protein for the first time. Although the structure of the mutant form of the protein was not investigated, this study provides an excellent platform to build upon and will boost drug development efforts. Click here to read the full article.

Roche Gears up for Pivotal Phase 3 Huntington’s Disease Gene-Silencing Clinical Trial
NewsHD – March 29, 2018

Pharmaceutical giant Roche – currently without a timeline, but mindful of the urgency – is gearing up for the pivotal Phase 3 clinical trial of IONIS-HTTRx, the gene-silencing drug shown to dramatically reduce the amount of the toxic protein implicated in Huntington’s disease in Phase 1/2a trial results announced March 1. Click here to read the full article.

New Version of Genome Editing System Holds Potential to Treat Huntington’s
Huntington’s Disease News – March 20, 2018

A modified version of the genome-editing CRISPR-Cas9 system may prevent the production of faulty huntingtin protein, moving closer to treatment for Huntington’s disease. Click here to read the full article.

Immunotherapy Candidates Showing Promise as Potential Ways of Treating Huntington’s
Huntington’s Disease News – April 3, 2018

Potential immunotherapies are showing some positive early results in clinical and preclinical tests, and may offer hope to treat Huntington’s disease, according to a recent review published in the journal Molecular Psychiatry. This is just one of many potential treatments in the pipeline. Click here to read the full article.

HTT Mutations Seen to Cause Extensive Brain Remodeling, Affecting Motor and Cognitive Skills
Huntington’s Disease News – April 10, 2018

Mutations linked to Huntington’s disease cause more extensive remodeling of functional connectivity in various regions of the brain than previously thought, affecting patients’ motor and cognitive skills, research looking at whole brain connectivity in disease carriers reports. Click here to read the full article.

Pigs Become Effective Model for Huntington’s Disease
Front Line Genomics – April 9, 2018

Scientists have used the gene-editing tool, CRISPR/Cas9 gene editing to create a pig model of Huntington’s disease (HD), which is to be used for drug testing. Click here to read the full article.




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