PUBLISHED BOOKS

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.

Erin Paterson always expected she’d get married and have kids. But when Erin was diagnosed with a rare genetic disease, she and her husband were faced with a difficult decision: Should they continue trying to get pregnant, knowing their child could inherit the same debilitating condition? Were their dreams of having a family over just as they’d begun?

In this intimate account of secrecy, sorrow, and finally hope, Erin shares her journey along the path to motherhood. All Good Things: A Memoir is an inspirational narrative about overcoming unexpected life challenges and learning to find happiness.

Positively Rare features twenty-one first-person stories from people who have spent years upon years searching for a diagnosis, who have experienced medical gaslighting, and who live with medical PTSD. Stories about people who have discovered a passion for art, changed careers, and had families post-diagnosis. Stories from parents, caregivers, scientists, genetic counsellors, rare disease advocates, and more.

 This book amplifies the collective voice of the rare disease community and helps eliminate the fear and stigma of living with a rare disease.

COMING NOVEMBER 20 , 2024

When Bloopy the alien comes to earth to learn more about humans he meets Emma and her family. He quickly wonders why Emma’s grandpa is behaving so differently. In this heart warming story Emma teaches Bloopy about having empathy and understanding for people living with Huntington’s disease.

COMING NOVEMBER 2024