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...
Appearance, Huntington Disease, Mental Health, Positive Living
I’m honored to be one of three women invited to share a story about courage and perseverance at this month’s That’s What She Said storytelling event. Hosted by Courtney McLeod, these gatherings bring together a kind and caring community of women. I have no doubt...
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...
Article, Huntington Disease, Infertility
When I rolled out of bed that Saturday morning my entire body was aching. A line of bruises ran along my swollen stomach and I felt dizzy for some reason. This must be a weird side effect from the medication, I thought to myself. Even though I only had thirty minutes...
