1000 kms for Huntington's youth
Hi, my name is Mark Chapple & I have, for many decades now, led a life impacted by Huntington’s disease in my whānau. Last March I cycled from Cape Reinga to Bluff with some close & keen friends following a set course called Tour Aotearoa. It took us 23 days to cover the distance & conditions were kind. We took the opportunity to use our ride as a fundraiser to raise awareness of Huntington’s disease & the people it impacts in our community. The recipient of the money we raised was the Centre for Brain Research at the University of Auckland where Distinguished Professor Sir Richard Faull leads an internationally renowned program of research in Huntington’s disease along with the Neurological Foundation Human Brain Bank. We enjoyed our trip so much we are now looking to ride from East Cape to Cape Egmont.
HD clinical trial coming to NZ!
HDYO-NZ members attended an update of the clinical trial which is testing the safety and effectiveness of drug RG6042 (Genentech/Roche) for patients with Huntington’s disease. Associate Professor Richard Roxburgh provided a summary of what the trial would look like for New Zealand, and what it means to be involved in this ground-breaking trial.
National Huntington's Disease Conference 2018
The New Zealand National Huntington’s disease Conference, hosted by the Huntington’s Disease Association of Auckland (HDAA), was held on the 4th and 5th of May. The conference brings together HD researchers, clinicians, carers, patients and their families from around the country.
In this blog post we will cover some of the most popular talks from the conference, however if you want to hear take home messages from all the talks check out our collection of live tweets from the conference here: http://wke.lt/w/s/u7l7Q
Review: Do you really want to know?
‘Do you really want to know?’ is a documentary by John Zaritsky about genetic testing for Huntington’s disease. It follows people who have each gone through the genetic testing process. The documentary gives you an open look into the impact Huntington’s has had on these people’s lives and what the test, negative or positive, has meant for them.
Review: The Inheritance Documentary
‘The Inheritance’ is a documentary which follows Bridget Lyon and her family through their journey with Huntington’s disease. We trace their family line from an insane asylum in Aberdeenshire to the shores of Wellington. This journey, which takes us forward hundreds of years, brings us to Bridget’s mother, Judy, who is living through the final phase of the disease. This isn’t a story of acceptance or overcoming, it’s a story about love and family and how you fight to keep them in the face of a disease like Huntington’s.
Baking, and eating, for a good cause!
The Inheritance screening
The Inheritance is an emotional, yet inspiring, documentary following the lives of a Wellington family affected by Huntington’s disease (HD). The film gives great insights into the reality of living with HD, and caring for a loved one with HD. It also highlights the resilience of this family, and leaves an uplifting message of hope and determination.
