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...
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, Mental Health, Positive Living
I attended a conference for families impacted by Huntington’s disease (HD) — a spectacular event with expert panels and motivational speeches. But it’s the hugs and the feeling of being loved that I remember the most. There’s nothing like having a room full of people...
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...
Huntington Disease, Mental Health, Podcast, Positive Living
I was so pleased to be asked to tape an episode of the “I Don’t Know How You Do It” podcast along side these two outspoken rare disease advocates. Host, Jessica Fein, is a published author and she was kind enough to write the forward for my latest...
