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In the Know – July 2017

Volume 12, Issue 7



Vanguard school principal walking across Sask. to raise awareness about Huntington disease
Prairie Post – July 12, 2017

A school principal from Vanguard has found a productive way to spend his summer vacation and raise awareness for Huntington disease (HD). This summer, starting on July 10, Greg is walking across the province of Saskatchewan in order to raise awareness and support for HD research. Click here to read the full piece. Click here to learn more about Greg’s walk and support him in his journey.

Saskatchewan principal to walk across province for Huntington Disease awareness
The Saskatoon Star Phoenix – July 8, 2017

Greg Shwaga’s walk to raise awareness and support for research into Huntington disease will take him across Saskatchewan from the Alberta border near Macklin all the way to the Manitoba border near the Lake of the Prairies. Click here to read the full piece. Click here to learn more about Greg’s walk and support him in his journey.

EHDN – July 8, 2017

The European Huntington’s Disease Network (EHDN) publish their EHDN newsletter three times a year. In the current edition you can read about the day Pope Francis had an audience with HD families from all over the world. You will find highlights from the HD Therapeutics Conference, updates on clinical trials and Enroll-HD. Click here to read it now.

Ionis Huntington disease drug a step closer to a critical Phase 2 study
CureHD Blog – June 27, 2017

CureHD Blog writer Gene Veritas discusses the recent developments made by Ionis Pharmaceuticals; the two positive announcements about the historic Phase 1 clinical trial of its gene-silencing drug for Huntington disease (trial enrollment is complete), and the company will extend the study for all patients who complete Phase 1. IONIS-HTTRx aims to alleviate HD symptoms by reducing production of the huntingtin protein in brain cells. Click here to read the full blog post.

The 2017 Amaryllis Campaign is well underway!

Many congratulations to the 2017 Amaryllis Campaign Early Bird Winner: Jeanne from South River, Ontario. Do you know the story behind the annual Amaryllis Campaign which is in its 33rd year in 2017? Read our latest blog post to learn more.

Do you know what makes our Champions of Hope Monthly giving program so popular?

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

Register before September 1st as prices will go up!

Learn more about YPAHD (Young People Affected by Huntington Disease) Day, our national youth conference taking place in Moncton, Kelowna and Toronto this year, by clicking here. Registration packages for each location and funding applications are also available at this link.

Family Services Staff Announcements
HSC-Brandon-Westman Manitoba Welcomes New Family Services Worker

The Family Services Team at the Huntington Society of Canada is pleased to welcome Carla Champagne, BSW, RSW, as Family Services Worker for Brandon-Westman, Manitoba. Carla starts work on Monday, July 17, 2017. To read the full announcement, please visit this page.


A Freedom Tower on Chromosome Five
HDBuzz- June 29, 2017

Exclusive HDBuzz interview with Professor Lesley Jones of Cardiff University and Professor Sarah Tabrizi of University College London, about their new paper describing a ‘genetic modifier’ for Huntington disease. Click here for the interview.

Enrollment in Phase 1/2a Study of IONIS-HTT Rx in Patients with Huntington Disease Completed and Open-Label Extension Study to Open in 2H 2017
IONIS Pharmaceuticals – June 22, 2017

Ionis Pharmaceuticals, Inc. (NASDAQ: IONS) has announced the completion of enrollment in the Phase 1/2a randomized, placebo-controlled, dose escalation study of IONIS-HTTRx in patients with Huntington disease (HD). Click here to read the press release.

Update confirms Huntington disease ‘gene silencing’ trial on track
HDBuzz – June 22, 2017

Ionis Pharmaceuticals launched the first ever trial of a Huntington-lowering drug – sometimes called a ‘gene silencing drug’ – in late 2015. In a significant update, the company has announced two important milestones: the trial is now fully recruited, and an ‘open-label extension’ will be activated for the volunteers in the current trial. Click here to read the full article.

Huntington Study Group

For more information about high-quality clinical research trials and studies in Huntington disease (HD), the Huntington Study Group offers the first and largest HD clinical research network of over 400 active and compassionate investigators, coordinators, scientists and HD experts at over 100 HSG Credentialed Research Sites across the globe.

Enroll-HD – June 2017

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

Over the next few weeks, the technical support team will be performing a number of diagnostic tests on the EDC system with the goal of improving system performance and reducing page load times. Additionally, the EDC will be offline briefly this Saturday, June 24th, for maintenance between the hours of 5:00pm and 9:00pm Eastern Daylight Time. During this time, the EDC will not be accessible. If you have any questions, contact


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