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In the Know – December 2017

Volume 12, Issue 12

 

IONIS-HTTRX ANNOUNCEMENT

BREAKING NEWS: IONIS-HTT RX DRUG SUCCESSFULLY LOWERS HARMFUL HUNTINGTIN PROTEIN
DECEMBER 11, 2017

Ionis Pharmaceuticals announced that the HTTRx drug has successfully lowered the harmful huntingtin protein in spinal fluid, the drug is safe and well tolerated. This announcement is promising and gives us substantive hope that the treatment is near. Click here for more information.

SUCCESS! ASO DRUG REDUCES LEVELS OF MUTANT PROTEIN IN HUNTINGTON’S DISEASE PATIENTS
HDBUZZ – DECEMBER 11, 2017

In an announcement likely to stand as one of the biggest breakthroughs in Huntington’s disease since the discovery of the HD gene in 1993, Ionis and Roche today announced that the first human trial of a huntingtin-lowering drug, IONIS-HTTRx, demonstrates that it reduces mutant huntingtin in the nervous system, and is safe and well-tolerated. Click here to read the full article.

‘GROUNDBREAKING’ DRUG TRIAL COULD LEAD TO FIRST HUNTINGTON’S DISEASE TREATMENT
CTV NATIONAL – DECEMBER 11, 2017

For the first time ever, an experimental drug has showed promise in lowering levels of brain toxins caused by Huntington’s disease. It’s an early-stage breakthrough that could guide researchers towards an effective treatment for the fatal inherited brain disorder. Click here to watch the full report.

MAJOR BREAKTHROUGH IN HUNTINGTON DISEASE CANADIAN TRIAL
CITYNEWS TORONTO – DECEMBER 11, 2017

There is new hope for thousands of people diagnosed with Huntington Disease, as the results of a clinical drug trial with Canadian patients were announced on Monday. Click here to watch the full report.

HSC NEWS

Happy Holidays from HSC!

All of us here at HSC want to wish you a happy holiday season. Click here to watch CEO, Bev Heim-Myers reflect on 2017.

Making a Difference: Matthew Kliewer, HD Rockstar

Matthew Kliewer has spent the majority of his life as a musician. He is currently in mid-album production and is anticipating an early 2018 release. This album will also feature a song dedicated to his wife. When the album is released, he will be donating 100% of the royalties earned from this track to the Huntington Society of Canada. Click here to read more about Matthew’s journey with HD and his musical past.

Looking Back at YPAHD Days 2017

The 2017 YPAHD Days were held last month in Toronto, Moncton and Kelowna. Across the country, youth aged 14-35 gathered to learn about using social media, discussed grief and guilt, practiced different care strategies, heard the latest in research updates, and thought about event planning. Click here to read Jen’s experience in Kelowna, BC.

2017 Amaryllis Campaign: HUGE SUCCESS

We are thrilled to announce a complete sell-out of the 2017 Amaryllis Campaign with over 20,000 Amaryllis bulbs growing and inspiring hope across Canada. A sincere thank you to each and every one of our dedicated volunteer sellers who helped exceed our goal of raising over $115,000 to fund services for families affected by Huntington disease and to support HD research. As your Amaryllis starts to grow, please send in your photos! Our 2017 Amaryllis Photo Festival is in full swing and we want to see you. Take a selfie, take a photo with your pet, take a photo with your grandchild, we want to see them all! Photos are a fun way to stay connected to the campaign and show off those big, beautiful, orange sovereign bulbs! Send us your photos.  Thank you for your tremendous and continuous support and all you are doing to inspire hope!

Champion of Hope

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

GENETIC FAIRNESS

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

POLICY STATEMENT ON THE COLLECTION, USE AND DISCLOSURE OF GENETIC TEST RESULTS
OFFICE OF THE PRIVACY COMMISSIONER OF CANADA – DECEMBER 2017

The Privacy Commissioner has issued an updated Statement on the use of genetic information. Click here to read the full statement.

 

       

 


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