Volume 12, Issue 5
GENETIC FAIRNESS
PRESS RELEASE: GENETIC FAIRNESS BECOMES LAW, ALL CANADIANS ARE NOW PROTECTED
CCGF – May 4, 2017
We are very pleased to announce that Bill-S201, An Act To Prohibit and Prevent Genetic Discrimination, has officially become law in Canada. All Canadians will now be protected from genetic discrimination. Click here to read the press release.
Catch up on news about Bill S-201 before it was passed into law, below:
Bill aims to criminalize genetic discrimination
CTV News Two, Alberta Primetime – April 27, 2017
CEO Bev Heim-Myers, also Chair of the Canadian Coalition of Genetic Fairness, talks to CTV News about the increasing use of genetic testing and Canada’s need to protect the results collected from that testing. Click here to watch the video interview.
Will insurance costs rise dramatically if anti-genetic discrimination bill becomes law?
Insurance Journal – April 25, 2017
The Canadian Institute of Actuaries believes the cost of term life insurance products could rise by as much as 50% and that insurers could withdraw ailments from critical illness insurance if an anti-genetic discrimination bill becomes law. But others say underwriting has evolved to the point where relying on any single test to determine insurance eligibility doesn’t hold water anymore. Click here to read the entire piece.
HSC NEWS
May Is Huntington Disease Awareness Month
Light It Up 4 HD, What is HD? PSA Campaign and Barb’s Ribbons of Hope
Through out May, we’re spreading awareness about Huntington disease (HD) and Juvenile Huntington disease (JHD) with a host of activities. You’re one stop shop for all May awareness events can be found by clicking here. Head out to a #LightItUp4HD site near you, share our audio and video ads with your friends and family and support Barb’s Ribbons of Hope – this month lets show Canada, and the world, the strength and resilience of the HD community! Be sure to follow along on our Facebook, Twitter and Instagram pages to see what others are up to as well.
May Is Huntington Disease Awareness Month and one Belleville woman’s commitment Is stronger than ever
Inside Belleville – May 12, 2017
Former HSC Niagara Chapter President, Judy Harding, talks about her connection with Huntington disease and how her family has been impacted by the disease. Click here to read the article.
Northumberland resident says physician-assisted dying laws need to be all encompassing
Northumberland News – May 11, 2017
One of the faces of our PSA Campaign, Rob Laycock spoke to Northumberland News about the Medical Assistance In Dying (MAID) legislation that became law in Canada in June 2016. Click here to read the article.
Global News Durham Speaks to Durham Family About Huntington disease
Global Durham – May 11, 2017
Global Durham sits down with Bunny Clark and her family to discuss Huntington disease and the importance of Huntington Disease Awareness Month. Click here to watch the video.
Getting to know HSC’s Champions
HSC Focus – May 9, 2017
HSC’s Development Coordinator, Betty Philip, talks about her experience with HSC thus far, particularly her conversations with some of HSC’s Champions of Hope, in our latest blog post. Click here to read it now.
Pope Francis to say a global prayer while meeting with Huntington disease families
Times Colonist – May 7, 2017
On May 18th, Pope Francis will meet families affected by Huntington disease (HD). This will be the first papal audience with HD families. Thousands are expected to attend the event at Aula Paolo VI (also known as the Sala Nervi) in Vatican City. Click here to read the piece.
Run raises awareness for Huntington disease
Times Colonist – May 7, 2017
Beka Pottery discusses her involvement with the Victoria Run and her connection to Huntington disease and the Huntington Society of Canada. Click here to read the piece (scroll down to article 3).
Volunteers Wanted
Times Colonist – May 2, 2017
Patient Engagement A New Frontier for Drug Makers
Healthy Debate – April 27, 2017
The Huntington Society of Canada realized early on that if there was to be hope of a cure for Huntington disease – or medications to control slow, stop or reverse symptoms – patients would need to be more involved in setting and designing the research agenda. Click here to read the entire piece.
Providing a helping hand to those caring for loved ones
Ministry of Finance, Ontario – April 27, 2017
Ontario is making it easier for people who care for loved ones, with more respite services that allow people to take a break from their unpaid duties, increased education and training opportunities for caregivers, and a new, streamlined Ontario Caregiver Tax Credit. Read the full news release here.
Greg Shwaga Is Walking Across Saskatchewan For Huntington Disease
This summer, starting on July 10, Greg plans to walk across the province of Saskatchewan in order to raise awareness and support for HD research. His journey will begin on the Alberta/Saskatchewan border and continue east to the Saskatchewan/Manitoba border near Lake of the Prairies east of Yorkton. Click here to learn more and support his amazing journey.
YPAHD DAY 2017
Registration Opens May 25th, Funding Applications Due June 30th
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-BC Resource Centre Welcomes New Social Worker
The Family Services Team at the Huntington Society of Canada is pleased to welcome Rhonda Romolock, BSW, as Social Worker at the British Columbia Resource Centre. Rhonda starts work on Monday, May 15, 2017. To read the full announcement, please visit this page.
RESEARCH NEWS
Has a “wonder drug” for dementia been discovered? (Spoiler alert: no.)
HDBuzz – May 7, 2017
If media reports of a “wonder-drug” that could “stop all neurodegenerative brain diseases, including dementia” seem too good to be true, that’s because they are. The truth behind the headlines is that researchers tested thousands of already-licensed drugs in worms, and a couple that went on to show beneficial effects in mouse models of two rare forms of dementia. Click here to read the full article.
Huntington’s Disease Therapeutics Conference 2017 – Day 3
HDBuzz – April 30, 2017
HDBuzz summarizes the final day, as well as Day 1 and 2, of the Huntington Disease Therapeutics Conference in Malta. Read Day 3’s summary here. Day 1 and Day 2 summaries are also available on HDBuzz.
Enemy at the gates – huntingtin disrupts nuclear transport
HDBuzz – April 21, 2017
Exciting new studies provide evidence that a particular kind of cellular trafficking goes awry in Huntington disease. Specifically, researchers have learned that traffic in and out of the cells control center – the nucleus – breaks down in HD. These findings open up new avenues for HD research. Read the full article here.
Research Report
Survey of the HD Patient and Caregiver Community Reveals Most Impactful Symptoms and Treatment Needs
In preparation for a meeting with the U.S. Food and Drug Administration (FDA) on Patient-Focused Drug
Development in Huntington’s disease, the Huntington’s Disease Society of America (HDSA) created and distributed two comprehensive surveys on the symptom experience and treatment approaches for Huntington’s disease. Click here to read it.
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 – April 2017
Click here to check out the latest updates in Enroll-HD’s monthly bulletin.
