Appearance, Mental Health, Positive Living, Rare Disease
I’m excited to be joining fellow rare disease advocate Laura Will on June 19 for the Know Rare “Authors in Rare Disease” series. Together, we’ll share how storytelling and advocacy can transform pain into purpose. It’s going to be an inspiring conversation you won’t...
Featured, Huntington Disease, Rare Disease
I’m grateful to the Vereniging van Huntington for sharing my story and my work. In their recent article, they highlighted how my books All Good Things, Huntington’s Disease Heroes, and Positively Rare aim to amplify voices from the rare disease community and create a...
Article, Huntington Disease, Mental Health, Rare Disease
I recently attended a medical conference for the Huntington’s disease (HD) community. Hundreds of people were gathered to collaborate, share knowledge, and learn how to better address the needs of their patients. During the first session, I found it challenging to...
Appearance, Huntington Disease, Mental Health, Rare Disease
I’m delighted to let you know that I’ve been invited to tell my personal story at this month’s Vanderbilt support group meeting. I’ll be speaking about how I discovered that Huntington’s disease runs in my family and how that knowledge shaped my decision to have...
Article, Huntington Disease, Positive Living, Rare Disease
As you may know I own a publishing company called Lemonade Press – a publishing company focused on empowering people from underrepresented communities through storytelling. My latest book is called Positively Rare and I had the honour of writing about the book...
