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In the Know – November 2018

VOLUME 13, ISSUE 11

 

RESEARCH NEWS

OBSERVATIONAL HUNTINGTON DISEASE NATURAL HISTORY STUDY UPDATE
HSC WEBSITE – NOVEMBER 7, 2018

On November 7, 2018, Roche Pharmaceuticals announced the locations of the clinical trial sites in Canada that will be participating in the Observational Huntington disease Natural History StudyClick here to read the full update.

HDSA FAQ ON THE ROCHE/GENENTECH RG6042 PROGRAM
HDBUZZ – OCTOBER 19, 2018

On Wednesday, September 26th, HDSA hosted a webinar presented by Genentech/Roche in which representatives from their Huntington’s disease team shared details and answered questions about upcoming Genentech/Roche clinical trials for HD. HDSA received hundreds of questions before, during, and after the webinar. Here HDSA’s staff scientists, with guidance from Genentech/Roche, have tried to address the most frequently-asked questions. Click here to read the full article.

HSC CONFERENCE NEWS

2018 HSC Conference – Keynote: Peter Rosenberger
HSC Facebook Page – November 2, 2018

Drawing upon his own caregiving journey for more than three decades through a medical nightmare, author and syndicated radio-host, Peter Rosenberger, helps safely lead fellow caregivers through many of the difficult and lonely places that caregivers know all too well. Click here to watch part one of Peter’s keynote presentation at the 2018 HSC National Conference on our Facebook page. Click here to watch part two. If you are not on Facebook, we will be uploading the presentation videos to our website in the coming weeks.

2018 HSC Conference – Keynote: Dr. Blair Leavitt and Dr. Lauren Boak
HSC Facebook Page – November 2, 2018

Dr. Blair Leavitt from UBC and Dr. Lauren Boak from Roche provide an update on Huntingtin-Lowering therapies and Roche’s Huntington disease program and clinical trials. Click here to watch Dr. Leavitt and Dr. Boak’s keynote presentation at the 2018 HSC National Conference on our Facebook page. If you are not on Facebook, we will be uploading the presentation videos to our website in the coming weeks.

2018 HSC Conference – Keynote: Yvonne Heath
HSC Facebook Page – November 3, 2018

“I don’t know what to do!” “I don’t know what to say!” Have you ever said these things or felt this way when it comes to grief, death or dying? Join Yvonne as she reminds us to grieve, but that we can also choose to Just Show Up for ourselves and others so we can live our best life. Click here to watch Yvonne’s keynote presentation at the 2018 HSC National Conference on our Facebook page. If you are not on Facebook, we will be uploading the presentation videos to our website in the coming weeks.

2018 HSC Conference – Keynote: Dr. Jeff Carroll
HSC Facebook Page – November 3, 2018

Where’s the Silver Lining? HD Drug Progress 25 Years after the Gene with Dr. Jeff Carroll HD Researcher and HD Buzz Co-Founder. Click here to watch Dr. Carroll’s keynote presentation at the 2018 HSC National Conference on our Facebook page. If you are not on Facebook, we will be uploading the presentation videos to our website in the coming weeks.

Building up resilience to grief helps prepare for life’s losses, says author
Fresh Radio 93.1 – November 7, 2018

Grief and loss are universal. “Everyone grieves, regardless of age, race, culture, gender, sexual orientation or economic situation,” Yvonne Heath, the author of Love Your Life To Death said. Heath advocates for more conversations around loss, grief and dying and was in the Okanagan speaking at the Huntington Society of Canada national conference. Click here to read the full article.

You Might be Caregiver If…
Zeal Access – November 3, 2018

At the Huntington Society of Canada’s National Conference in Kelowna, we talked with caregiving expert Peter Rosenberger about the importance of taking care of the caregiver. Part of that care can include laughter. In this video clip, Rosenberg shares a few of his ‘you might be a caregiver if’ jokes. Click here to watch the full interview.

Fundraising With Snowmobiles
Zeal Access – November 6, 2018

At the Huntington Society of Canada’s National Conference in Kelowna, we talked with Brett Mitchell about the numerous Guinness World Records he has won involving snowmobiling. Those record attempting events have raised over $200,000 for the Huntington Society of Canada. Click here to watch the full interview.

Want to Help a Person Grieving? Just Show Up!
Zeal Access – November 8, 2018

Yvonne Heath explains that the best thing a person can do to help someone grieving is to simply show up and figure out what that grieving person really needs. Odds are they do not need more flower arrangements or casserole dishes. Instead, they may need someone to shovel their driveway, clean the gutters, walk the dog, or get them some milk from the store. Click here to watch the full interview.

Huntington Disease Youth Camp
Zeal Access – November 12, 2018

At the Huntington Disease National Conference held in Kelowna, B.C, we talked with Chandler Swope of the Huntington’s Disease Youth Organization (HDYO) about the summer camp they host (along with Huntington Disease Society of Canada and the Huntington Disease Society of America). Click here to watch the full interview.

HSC NEWS

2017/2018 ANNUAL REPORT

The Huntington Society of Canada is guided by integrity and transparency in our fundraising. We believe that every single donation we receive is precious and we are committed to putting each gift to work to find a meaningful treatment and to provide support and services to those affected by Huntington disease. Our latest 2017/2018 Annual Report is now available online. Click here to view and download it today.

GENETIC TESTING: Q&A WITH CLARE GIBBONS

Welcome to our new Q&A series! A series where we ask you, our HSC community, to submit your questions on a specific topic and we bring you answers from professionals who understand HD. We recently asked the community to submit their questions on genetic testing and Clare Gibbons, North York General Hospital Genetic Counsellor, has provided the answers. Click here to read the full Q&A.

AMARYLLIS

The 2018 Amaryllis Campaign is quickly moving to the final leg of the campaign with less than 10% left to be sold. Don’t miss your opportunity to inspire hope with these beautiful orange sovereign amaryllis flowers. Click here to place your order today.

CHAMPION OF HOPE

Becoming a Champion of Hope monthly donor is simple and risk free. Click here to learn more about how a steady monthly contribution from you can help aid HD research, services and education.

       

 


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