Media and HD

Below are our go-to list of interesting representations of Huntington’s disease in the media. Ranging from Australian news reports to heartfelt personal stories to feature length documentaries, there is something for everyone.

A feature-length documentary on YouTube about HD and testing (in French, with subtitles)

Lisa Genova interview on ABC TV – available to view on iView until 18th March, 2016

Daughter shares the same Huntington’s disease gene which killed her late father‘ – Daily Telegraph, 12th March 2016

Lisa Genova on ‘Conversations with Richard Fidler’ – a radio interview with the author of Inside The O’Briens, broadcast through the ABC on 3rd March, 2016

Lisa Genova on ‘ABC Classic FM – Midday’ with Margaret Throsby – a radio interview with the author of Inside The O’Briens, broadcast through the ABC on 24th February, 2016

2015 11 Sunnybank Community & Sports Club News

Sunnybank Community & Sports Club community news – November 2015

Coolum & North Shore Advertiser, 19th November 2015

Coolum & North Shore Advertiser, 19th November 2015


Inside the O’Briens – a novel published by famed author Lisa Genova in April 2015

Ferris Wheel – a novel published by Katie Jackson

Eternal On The Water – a novel by Joseph Monninger

Breathless: An Inward Journey – written by C. Everette Hagler

The Woman Who Walked Into The Sea – a book chronicling the history of HD in the USA, by Alice Wexler


Sarah’s HD List – a thorough list of HD resources on the internet, ranging from science research to HD representations in the media to personal blogs

A Survivor’s Guide To Huntington’s Disease – a blog about living with HD

A Year Of Gratitude – a blog about living with HD

EmpowerHD – a blog for those at risk or HD positive

HDSanctuary – a blog for caregivers and those wanting to learn more about HD

HappyHuntingtonsDay – a blog about living with HD

Jacey’s Hope Faith and Love – a blog written by someone living with Juvenile HD

Jess Writes With Crayons – a blog written by a young Australian woman about living with the impact of HD

International News Stories:

We Have A Voice Radio – an international radio show dedicated to promoting awareness of HD around the globe.

Huntington’s Sufferer Rachel Rympa: Let Me Die‘ – an article published on 14th March 2016 in New Zealand

Should I take my own life – an 1st-person article published on 16th January 2010 by The Guardian (original link available here)