Volume 10, Issue 10
NEWS
What They Said: 15 Wing charitable campaign
Moose Jaw Times Herald – October 6, 2015
On Tuesday, 15 Wing launched their annual Government of Canada Workplace Charitable Campaign. See the full story and watch the video here.
The Federal Government wants your Opinion on Assisted Dying
October 2015
The Federal Government is conducting an online survey regarding the important issue of assisted dying and have asked us to share this survey with the HD Community. They have extended the deadline to November 1, 2015.
The survey is part of the country’s efforts to consult Canadians on how it should respond to the Supreme Court’s February ruling in Carter v. Canada. The judgment, which comes into effect on Feb. 6, 2016, struck down the laws prohibiting physician assisted dying. Canada’s consultation closes on October 1, 2015.
We understand that there are a variety of opinions in the HD Community regarding assisted dying and we wanted to provide you with the opportunity to have your voice heard.
If you would like to participate in the survey, please click here.
Revving up for charity
Winnipeg Free Press – September 23, 2015
Over 200 go-karters and supporters joined the fun at Thunder Rapids in Headingley on Sept. 13 and raised over $20,000 for the Huntington Society of Canada in the 20th Annual Huntington Indy Go-Kart Challenge. The money raised goes directly to fund programs in Family Services and Research for people affected by Huntington disease. Click here to view the article and photo.
The first Amaryllis Bulbs of 2015 have arrived!
It’s that wonderful time of year – where hope is growing and blossoming – as our first Amaryllis bulbs have arrived to our volunteer sellers. To see photos of our Amaryllis bulbs arriving and growing, please regularly visit the HSC Facebook Page or follow us on Instagram @huntingtonsocietycanada. We will continue to provide photo updates throughout the campaign.
And, you still have time to order. Thanks to our amazing Amaryllis supporters, we are already over 85% sold out, so please don’t delay. You can place your order by visiting www.inspirehope.ca, emailing amaryllis@huntingtonsociety.ca or by contacting us at 1-800-998-7398.
Thank you for all you are doing to Inspire Hope.
The Globe takes top honours at Online Journalism Awards
The Globe and Mail – September 27, 2015
In addition to its coverage of the October, 2014, shooting on Parliament Hill, which won the Breaking News (Large) category, The Globe was nominated for two features. The nominations were for Saving Cyla, a multimedia feature about an operation on a 19-year-old woman to remove a tumour; and for Kim’s Choice, about a woman with Huntington disease who chooses to starve herself to death before the illness makes her too weak to decide her own fate. To read this full article, click here.
RESEARCH NEWS
HDBuzz primer: Clinical trial designs and phases
HDBuzz – October 9, 2015
The last few years have been full of announcements about the results of clinical trials for HD drugs, but it can be surprisingly hard to understand what these results actually mean. What seems like a simple question – did a drug work or not – turns out to be more complicated than you’d expect. HDBuzz is here to help HD families untangle hope from hype when it comes to clinical trial announcements. To read more, click here.
Enroll-HD Monthly Bulletin
September 2015
The September 2015 Enroll-HD Monthly News Bulletin for investigators and site staff includes regular progress updates on the study, important news, and tips and reminders about study procedures. Click here to review the bulletin.
Hundreds of HD Families Join FDA Hearing to Shape Drug Development for Huntington Disease
HDSA.org – September 22, 2015
Huntington’s Disease Society of America (HDSA) presents results from 3,600 HD family surveys.
Today more than 250 family members affected by Huntington’s disease (HD) from across the United States will join the Huntington’s Disease Society of America at the U.S. Food and Drug Administration’s (FDA) Public Meeting on Huntington Disease Patient-Focused Drug Development. The hearing, which was advocated for by HDSA, is a one-of-a-kind opportunity for families to directly educate officials about the devastating impact of HD. To read the full press release from HDSA, click here.
HSC STAFF CHANGES
The Huntington Society of Canada is pleased to announce our new Director of Family Services and Community Development. Angèle Bénard is a valued member of the Family Services Team and previously was the Resource Centre Director in Northern Ontario. Over the last 7 years, Angèle has demonstrated her commitment to the HD Community and is always willing to take on new responsibilities and challenges, including the co-development and implementation of the HSC Youth Mentorship Program. Angèle began her new role as Director of Family Services and Community Development on September 8. Angèle’s wealth of experience, related to supporting the HD community, and her previous management experience with the Canadian Mental Health Association, positions her for success in this new leadership role with HSC. Angèle will be working from her office in Northern Ontario and will include regular visits to the Kitchener office along with cross country visits, as part of her travel regime.
We take this opportunity to thank Maribeth Meijer, our previous Director of Family Services and Community Development, for her outstanding work with HSC and wish her the very best in retirement. Angèle is a worthy successor to Maribeth and a welcome voice to the Senior Management Team.
We also welcome to the HSC team:
Jeff Hoffman, Manager of Development
Jeff will address all of your Amaryllis needs and is located in the Kitchener office.
Jana Papke, Family Services Coordinator
Jana is filling this new support position for our families, which is located in the Kitchener office.
Sarah Gauthier, Northern Ontario Resource Centre Director
Sarah is taking over from Angèle and is located in Northern Ontario.
Marla Benjamin, Northern Manitoba Resource Centre Director
After 29 years with HSC, Sandra Funk is retiring and Marla is assuming the RCD role in Manitoba.
