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In the Know – February 2018

Volume 13, Issue 2




All That There Is… Music and HD

For Peter, music was a way for him to live his best life. Whether it was through singing himself or writing songs, before his diagnosis or while symptomatic, music was always a focal point of Peter’s journey. Click here to read his full story.

Call the Midwife Leaves Viewers Heartbroken With Huntington’s Storyline

BBC period drama series, Call the Midwife, recently aired an episode where an expectant mother was diagnosed with Huntington’s chorea. Despite extra help from a Nurse, the father was unable to care for his two children and the newborn and the family were ripped apart by the condition. You can watch this show on BBC One or PBS. Click here for a full episode synopsis.

That’s a Wrap… 2017 Amaryllis Campaign

Thanks to each of you, the 2017 Amaryllis Campaign was truly incredible – we raised more funds, sold more kits, and had more new sellers and partnerships than in the past 5 years! Together, we raised well over $120,000 to fund research and services for individuals and families affected by Huntington disease and spread awareness from coast-to-coast across Canada. Click here to read more and to see the winners of the 2017 Amaryllis Photo Festival.

Champions Inspiring Hope

Peter and his wife are proud to support HSC because they feel that it is an important organization and that their monthly support is having the greatest impact. For Janet, every avenue is worth investing in and she believes that her consistent, monthly donations make a real difference. Click here to read more about the two special Champions of Hope we featured on the blog.


Keep up to date on the latest developments in genetic fairness. Click here for the most recent information.


HSC Funded Research Reduces HD Symptoms in Mice
Huntington Society of Canada – January 22, 2018

Research funded by the Huntington Society of Canada (HSC) and conducted by Dr. Stephen Ferguson, from the University of Ottawa Brain & Mind Research Institute, has shown to reduced Huntington disease (HD) symptoms in mice.  Dr. Ferguson’s research uses Roche Pharmaceuticals CTEP inhibitor which also reduces Huntington pathology in the brains of treated mice. Click here to read the full press release.

New Interest in an Old Target
HDBuzz – January 30, 2018

A recent mouse study of a drug known as CTEP suggests the drug is surprisingly helpful for HD-like symptoms in mice. This is a welcome surprise, because it suggests a well-understood brain process might be a useful drug target for future HD research. Click here to read the full article.

An Early Role for the Huntington’s Disease Gene – But Don’t Believe All the Headlines
HDBuzz – February 6, 2018

New hints are emerging about the normal role of the gene that causes Huntington’s disease. A recent report uses cutting edge techniques to study this question in cells growing in the lab. We’ll help separate the fascinating new science from some scary-sounding headlines. Click here to read the full article.

‘Phenomenal’ Trial Results May Yield Treatment for Huntington’s Disease, Experts Say
Chicago Tribune – December 12, 2017

The discovery of a drug that may stop, and perhaps even cure the fatal disease known as Huntington’s, is being hailed as “historic” by Louise Vetter, president and CEO of the Huntington’s Disease Society of America, and “phenomenal” and “fantastically promising” by Huntington’s researchers, including the woman who discovered the genetic mutation that causes the disease. Click here to read the full article.

Excitement as Trial Shows Huntington’s Drug Could Slow Progress of Disease
Live Watch News – February 3, 2018

A landmark trial for Huntington’s disease has announced positive results, suggesting that an experimental drug could become the first to slow the progression of the devastating genetic illness. Click here to read the full article.

New Drug Could Bring Hope to Those At Risk for Huntington’s Disease
NovaNext – January 19, 2018

In December 2017, a California company called Ionis released its preliminary results from a small Huntington’s disease study. These results have yet to be published or reported at medical meetings, but the findings so far are promising. They’ve developed a drug, called an antisense oligonucleotide, that reduced the production of an abnormal version of the huntingtin protein that could cause the disease. Click here to read the full article.

More University of Toronto Affiliated Scientists to Publish Lab Notes in Real Time
EurekAlert! – January 19, 2018

About 20 scientists affiliated with a University of Toronto research organization have agreed to publish their lab notes in real time, a groundbreaking move aimed at hastening the discovery of new medical treatments. Click here to read the full article.

Experimental Huntington’s Therapy Shows Promise in a Small Trial
Scientific American – January 16, 2018

As the sun went down on a recent Friday, the hospital clinic buzzed with activity. “Loads of patients turned up without appointments,” says Sarah Tabrizi, a neurologist at University College London. It wasn’t just the typical post-holiday rush. Many rushed in, Tabrizi suspects, after hearing news last month about a potential new therapy for Huntington’s disease. Click here to read the full article.

Why Gene Silencing Could Launch a New Class of Blockbuster Drugs
SingularityHub – January 17, 2018

Ever since the Human Genome Project transcribed our genetic bible in 1997, scientists have dreamt of curing inherited diseases at the source. The first audacious idea? Shoot the messenger. Click here to read the full article.

Substance Abuse May Accelerate Onset of Motor Symptoms in Huntington’s Disease
Neurology Advisor

Research published in Neurology provides further evidence that substance abuse has a strong effect on the age of onset of motor symptoms in Huntington’s disease. Click here to read the full article.




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