Volume 12, Issue 6
HSC NEWS
Recapping Huntington Disease Awareness Month 2017
Every May, we’re spreading awareness about Huntington disease (HD) and Juvenile Huntington disease (JHD) with a host of activities. Read our latest blog post to catch up on all the activities the HD community took part in over the course of the month, by clicking here.
Unicorns to designer babies: New gene editing tech could change course of evolution
CBC Radio’s The Current – June 6, 2017
YPAHD President Jackie Skinner joins Jennifer Doudna, professor of molecular and cell biology at the University of California Berkeley, and host Anna Maria Tremonti, on CBC Radio’s The Current to discuss CRISPR, a gene editing tool that allows scientists to remove or insert sequences into the genes of any living thing. Click here to check out the full episode.
Group of assisted-death providers publish clinical-practice guideline
The Globe and Mail – June 2, 2017
In the nearly 12 months since Canada passed its medical-aid-in-dying legislation, physicians who help patients end their lives have been struggling to understand one of the most contentious aspects of the new law: What constitutes a “reasonably foreseeable” natural death? Click here to read the full article.
Huntington disease is going to kill him — but this Neuroscientist will die trying
Kitchener Post – Jun 1, 2017
In this article, journalist Bob Young profiles frequent HSC collaborator Dr. Jeff Carroll. Loved by the HD community for his tireless work ethic and willingness to help others, Dr. Carroll has amassed $3 million in research grants as a neuroscientist with a mission to cure HD. Click here to read the full piece.
A clearer path to medically assisted death
CBC – June 2017
Dr. Brian Goldman, host of White Coat Black Art, discusses the passing of Bill C-14 (allowing medical aid in dying or MAID) a year later, and the impact it has had on Canadians thus far. Click here to read the full piece.
Francis made a day of ‘superlatives’ for the Huntington disease community, says event co-organizer
CureHD Blog – May 21, 2017
Gene Veritas sits down with Charles Sabine, one of the organizers of HDdennomore, for an interview reflecting on the historic event and the significance of the meeting to him and other HD families. Click here to read the entire piece.
Pope Francis declares: Huntington disease should be ‘hidden no more’
CureHD Blog – May 19, 2017
Gene Veritas recaps the historic meeting of Pope Francis embracing HD families in Vatican City on May 18th. Click here to read his summary.
Pope Francis receives patients of Huntington disease in Paul VI Audience Hall
Rome Reports – May 18, 2017
It is the first time that a pope recognizes the degenerative disease known as Huntington disease. He receives both the sick and their relatives from South America and other countries in the Paul VI Audience Hall. Click here to watch the entire proceedings.
Pope embraces Huntington afflicted in bid to end stigma
The Globe and Mail – May 18, 2017
Pope Francis embraced weeping mothers, fathers and children with Huntington disease on May 18th as he sought to remove the stigma that causes such devastating physical and psychiatric effects that its sufferers are often shunned and abandoned. Click here to read thefull piece.
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 Is Open, 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.
The 2017 Amaryllis Campaign is now underway!
This annual fundraising campaign has raised over $5 million since inception and inspires hope of a world free from HD. To learn more about the campaign and our popular Amaryllis Early Bird Contest, click here.
Do you know what makes our Champions of Hope Monthly giving program so popular?
It’s the simple and risk-free process that lowers our administrative cost while providing a stable funding base that makes an incredible impact on the HD community. To learn more, click here.
RESEARCH NEWS
Huntington disease trial test is ‘major advance’
BBC Health – June 8, 2017
Dr. Edward Wild, UCL Institute of Neurology, senior author of a new study led by UCL’s Huntington’s Disease Centre, says that it is the first time a potential blood biomarker has been identified to track Huntington’s disease so strongly. Click here to read the entire piece.
New study reveals a potential HD biomarker
HDBuzz – June 7, 2017
A team of researchers spanning multiple countries recently analyzed blood, brain images, and clinical exams from the TRACK-HD study. They found that blood levels of a protein called neurofilament light chain corresponded with the severity of HD, making it a potential biomarker. 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.
