Volume 12, Issue 3
GENETIC FAIRNESS
Press Release: Genetic Fairness One Step Closer to Canadians Making Informed Decisions About Their Health – Without Fear
CCGF – March 9, 2017
Click here to read the official press release from the Canadian Coalition for Genetic Fairness (CCGF).
Wilson-Raybould wants Supreme Court advice on genetic non-discrimination bill
CBC News – March 9, 2017
Just one day after 104 Liberals joined forces with Conservative and New Democrat MPs to give Bill S-201 final approval in the House of Commons, Justice Minister Jody Wilson-Raybould announced that she wants to refer the legislation to the country’s top court. Read the full article here.
Laws will make genetic discrimination illegal
Radio Canada International – March 9, 2017
MPs defied top government officials and voted in favour of legislation to protect people from genetic discrimination. Radio Canada International sits down with CEO Bev Heim-Myers (also Chair of the Canadian Coalition for Genetic Fairness) to discuss the historic night. Read the full piece here.
CIJA lauds passage of bill against genetic discrimination
The Canadian Jewish News – March 9, 2017
The Centre for Israel and Jewish Affairs (CIJA) lauded the House of Commons’ March 8 passage of a private member’s bill to prevent genetic discrimination, which survived a last-minute push by Prime Minister Justin Trudeau to oppose it on jurisdictional grounds. Read the full piece here.
Quebec cancer survivor welcomes Parliament vote to keep genetic test results private
CBC News – March 9, 2017
A Quebec mother and cancer survivor says Parliament’s vote Wednesday night in favour of banning genetic discrimination by insurers and employers means “peace of mind” for her and others in her position. Read the full article here.
Bill S-201: Liberal backbenchers defy Trudeau to Approve genetic testing bill
Huffington Post – March 8, 2017
Liberal backbenchers have defied Prime Minister Justin Trudeau, voting in favour of a bill that would bar health and life insurance companies from forcing clients to disclose the results of genetic testing. Read the full piece here.
Catch up on news about Bill S-201 before it was passed through House of Commons, below:
MP Rob Oliphant urges support for genetic discrimination bill
CBC – March 8, 2017
MP Rob Oliphant joins Heather Hiscox on CBC Morning Live to urge support for the original genetic discrimination bill being brought up in the House of Commons. Watch here.
Private member’s bill to prevent genetic discrimination
Ontario Morning, CBC – March 8, 2017
Wei Chen is joined by Senator Cowan to speak on Bill S-201 before the vote in the House of Commons. Click here to hear the full podcast.
Genetic Discrimination on Daybreak South with Chris Walker
CBC Radio – March 8, 2017
CBC Radio’s Chris Walker sits down with Bev Heim-Myers hours before the vote in the House of Commons. You can listen to the radio segment here. Genetic discrimination segment begins at 6:00.
A bill to ban genetic discrimination
Edmonton AM, CBC Radio – March 8, 2017
Senator James Cowan discusses the impending vote for Bill S-201 with CBC Radio. Check out the radio segment here.
Genetic Discrimination
Ottawa Morning, CBC Radio – March 8, 2017
Chair Bev Heim-Myers talks to Ottawa Morning radio to discuss genetic discrimination. Check out the radio segment here.
MPs reject Liberal government’s attempt to gut genetic discrimination bill
CBC News – March 7, 2017
An attempt by the Liberal government to gut the genetic discrimination bill was defeated by a coalition of MPs from across party lines last Tuesday evening, despite constitutional concerns raised by Justice Minister Jody Wilson-Raybould. Read the full piece here.
MPs to debate genetic testing bill
The Canadian Press – March 7, 2017
After a flurry of intense lobbying from insurance companies, health charities, a handful of provinces and the justice minister herself, the fate of a controversial genetic testing bill laid in the hands of Parliament. Read the full piece here.
Ontario MPP tries to rally federal Liberal vote on genetic discrimination bill
The Canadian Press – March 3, 2017
When Justice Minister Jody Wilson-Raybould turned to the provinces to help make the constitutional case against a bill on genetic testing, it was unlikely Ontario legislator Mike Colle was the one she hoped would view it as a call to action. But it was indeed Colle, who took Wilson-Raybould’s recent efforts to drum up opposition to the bill as a cue to ramp up his own efforts to support it. Read the full piece here.
Mackley: Genetic discrimination — it’s time for Canada to catch up
Calgary Herald – March 1, 2017
Genetics researcher and medical trainee Michael Mackley discusses the importance of protecting genetic test information in the last G7 country without it – Canada. Read his essay here.
HSC NEWS
Giving Back
Blog: HSC Focus – March 14, 2017
The Wiswells talk about giving back through legacy giving in our latest blog post. Check it out here.
Keep Calm and Raise Lots of Money
HSC Events Blog – March 9, 2017
It can always be difficult to plan an event that depends on the weather conditions. For the Winnipeg Chapter, excited and ready for the third year of their annual two-day snowmobile ride, HD500, alternative measures had to be put in place when when a warm spell hit the area. Read about it here.
A Huntington Story
Good Medic – March 2, 2017
Click here to watch two videos that help to build further understanding of Huntington disease from the perspective of a nurse and family caregiver who has HD in her family and from the popular TV show, Scrubs.
Family Tree Research for Medical Purposes
Splitting Heirs, Vernon and District Family History Society – March 2017
Frequent HSC collaborator and volunteer extraordinaire, Laurie Williams, wrote an article about medical genealogy and Huntington disease in the latest version of the medical journal, Splitting Heirs. Click here to read it, you can find it on page 4.
Reflecting on HD as a rare disease – and why Enroll-HD is so important
European Huntington Association – February 28, 2017
Chris De Sousa reflects on Huntington disease and the importance of projects like Enroll-HD this past Rare Disease Day. Read his essay here.
Hitting the trails for a good cause
Interlake Today – February 28, 2017
Employees, friends and family members from Selkirk’s own Steeltown Ford, although unable to mount their snowmobiles for their annual ride to raise money for the Children’s Rehabilitation Foundation and HSC this year, received tons of support for the event this year and years past. Read the full article here.
HDYO Celebrates 5 Years!
HDYO – February 22, 2017
Earlier this month, HDYO turned 5 years old. But what have they done in that time? The answer, fortunately, is lots! Check out the full timeline of events here.
CHEX Peterborough Sits Down with Peterborough Chapter President
CHEX – February 21, 2017
CHEX talks to Heath Sterling, President of the Peterborough Chapter of the Huntington Society of Canada. They discuss Huntington disease and about what the local chapter is doing to raise awareness and money for the cause.
Researching the hidden symptoms
MUNMED – Winter 2017
Newfoundland’s Memorial University recently published a newsletter from the Faculty of Medicine that featured locals Ruby and Rich Wheeler. Click here to read the piece, you can find it on page 11.
Huntington Society Will Fund 1-2 YPAHD Representatives for Conference in Illinois
Applications accepted until April 7, 2017
The Huntington Society of Canada is committing funding to send 1-2 YPAHD representatives to the National Youth Alliance (NYA) and Huntington Disease Society of America (HDSA) Convention this June 22nd – 24th in Schaumburg, Illinois (near Chicago). Through the YPAHD Representatives’ attendance, HSC hopes to further integrate YPAHD into the international discussion, and gather ideas and content to incorporate into future YPAHD days and Canadian conferences. The successful applicants will be asked to attend all portions of the HDSA Convention and NYA Day, and to report to the YPAHD membership at large, the YPAHD executive, and prepare a formal written report for HSC. Click here to apply.
RESEARCH NEWS
Weeding out the truth: can cannabis improve Huntington disease?
HDBuzz – February 24, 2017
Cannabis, or medical marijuana, has been touted as a treatment for lots of conditions, and Huntington disease is no exception. Whenever it hits the news there’s a lot of interest, and recently cannabis found the spotlight again with videos claiming it can reverse the nerve cell damage in Huntington disease. Read the full piece here.
Huntingtin grabs a hammer: DNA repair in HD
HDBuzz – February 22, 2017
DNA damage is a hot topic in HD – and new research offers an intriguing explanation. Canadian researchers have uncovered a potential role for huntingtin in the repair of DNA. Read the full piece here.
Huntington Disease: The Most Curable Incurable Brain Disorder?
Essay by Dr. Edward J. Wild
Click here to read the entire essay.
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.
N2 Clinical Research Participation Experience Survey (Available in English & French)
Open until March 31, 2017
N2 is assisting with recruitment for the Canadian Clinical Research Participation Survey funded by the CCTCC (Canadian Clinical Trials Coordinating Centre). Clinical researchers in Canada would like to hear from patients and study volunteers about their experience with clinical trials. Any Canadian who has ever been approached to participate in a clinical trial and either declined, did not qualify or participated is invited to respond. Click here to fill it out now.
Enroll-HD – February 2017
Check out the latest updates in Enroll-HD’s monthly bulletin here.
