Lisa Genova, New York Times bestselling author of Inside the O’Briens
We often remark in life that “nobody knows what goes on behind closed doors,” but without first-hand stories like these, I don’t think we really understand the extent of that sentiment. I implore anyone to readHD Heroes.
George Rainsford, actor and patron for the Huntington’s Disease Association
Essential reading for anyone affected by Huntington’s, whether carrier, caregiver, partner, or friend. Profoundly moving accounts by those with or at risk of inheriting this cruel disease.
I was truly brought to tears by the authors’ courage and fortitude in finding ways to deal with the hardships and create empowerment from the difficult road HD represents—it is motivational and inspirational for all of us to read.
Mark Guttman MD, FRCPC neurologist and clinical researcher in HD HD Heroes is a moving, powerful, and remarkable collection of personal stories from people affected by HD in some way. Their stories must be read by anyone interested in learning more about what makes our HD family community so amazing.
Professor Sarah Tabrizi, HD doctor and scientist
Huntington’s disease has been steeped in secrecy and fear for generations, leaving people in the community without a voice. This book changes that. Twenty-six people from nine countries bravely share their personal stories about living in the shadows of this disease. By doing so they are saying: Here I am. I will not be kept silent.
From a scientist who switched from cancer research to studying Huntington’s after finding out her mother had tested positive for the disease, to a young man whose biggest fear was testing gene negative and not inheriting the disease, to a woman who grew up in survival mode, unable to express her grief. We learn about the ways their lives are better off because of the hardships they have faced. By sharing these intimate parts of their lives, they are taking away the fear and stigma of living with HD in their families, and for that reason alone they are truly all HD heroes.
And when you read these stories, you will see that YOU are an HD hero too.
This book shares first-person stories from people who have tested gene positive, who have tested gene negative, or who have decided not to test, as well as stories from young carers, families living with juvenile HD, scientists, HD advocates, and more.
50% of the profits from the sale of this book will be donated to HDYO (Huntington’s Disease Youth Organization).
With stories from Charlie Burke, Emma Burnip, Ashley Clarke, Andrea Florian, Scarlett J. Florence, Lindsay Groot, Josh Halliday, Emma Harris, Rob Haselberg, Jenny Louise Johnson, Brandon Khoury, Sarah Khoury, Shelby Lentz, Domonique Claire Link, Dr. Tamara Maiuri, Joshua Marshall, Judy Melville, Paramjit Oberoi, Erin Paterson, Erin Pryce, Archana Ravada, Mackenzie Remillard, Gabrielle Russo, Joanne Somerville, Mandy Urbach, and Emma Wajswasser
Special contributions from Erika Boulavsky, Jenna Heilman (HDYO), Charles Sabine, and Dr. Malvindar Singh-Bains