Publications & Appearances
Podcasts
Articles
Featured
Appearances
Happenings
Podcasts
From Genetic Testing and Depression to Advocacy on the Amplify Podcast
I was so happy to be invited as a guest on the Amplify podcast I’ve come a long way since the dark days of depression that followed my diagnosis as gene positive for Huntington's disease. I was grateful to share the rare disease advocacy work I do, from publishing...
Rare Disease, Hard Truths & Beautiful Moments on the I Don’t Know How You Do It Podcast
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 book, Positively...
Blending Happiness with Migraine on the Warrior Within Podcast
Amber and I met through LinkedIn. We hopped on a call to chat and I ended up taping an episode of her podcast, Your Migraine Story Matters. Amber is a passionate and hard working migraine advocate. We spoke about migraines, Huntington's disease and finding happiness...
Bloopy the Alien Learns About HD on Help4HD Radio
My daughter and I were on Help4HD Live to speak about her new book! She wrote a children's picture book about Huntington's disease and we were asked to be on the program to speak about the inspiration behind the book and read an excerpt. I am so proud of my daughter...
Caregiving, Parenting and the Power of Storytelling on the On One Condition Podcast
I was so delighted to have the in-depth conversation with Sylvain from the On One Condition Podcast. We covered an array of topics including how I found out Huntington's disease ran in my family, going through genetic testing and how being gene positive for...
Managing the In Between Years on the I Am Not My Pain Podcast
Deciding to go through genetic testing for Huntington’s disease, managing the emotional aftermath of genetic testing and talking to kids about Huntington’s - these are just some of the important subjects Melissa and I spoke about on her podcast. She is such a gracious...
Articles
We are a Community of Caregivers
As I sat down in the plush green chair across from my therapist, I knew we were going to spend much of the day’s session talking about the stresses of being a caregiver. I didn’t want to talk about endless hours I dedicate to my dad’s care, but my frustration that few...
The Huntington’s Community Is Celebrating a Scientific Breakthrough with Mixed Emotions
It’s been a week since the news broke of UniQure’s trial successfully slowing the progression of HD, and I still find myself breaking down in tears. I have been going about my life, doing the groceries, going to the gym, cleaning the house…and the tears keep coming...
Why the Words Doctors Use Matter More than they Think
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...
Positively Rare: Erin Paterson Shares Her Experience of Being Gene Positive for Huntington’s
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...
Empowering Others with Huntington’s Through Storytelling
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...
Positively Rare, Positively Beautiful
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 and...
As Featured In
Erin’s Books featured by Vereniging van Huntington
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...
Know Rare Interview with Erin Paterson
I was recently interview for story which has been featured on the rare disease website - Know Rare. You can read the article HERE
Carlos Briceno Interviews Erin About her New book
I was so delighted to be interview by fellow HD advocate and columnist for HungtingtonsDiseaseNews.com, Carlos Briceno. His story covers how the book Huntington's Disease Heroes came about and why it is so important to keep sharing stories about the HD community. You...
Erin’s Story Featured on Patient Voice
“I was 12 years old when my grandmother passed away and I hated her. I just thought of her as a mean old lady who never smiled or spoke to me. I hated the way that thinking about her and talking about her took up so much of my family’s time and energy. Every time my...
Huntington’s Disease Heroes Book
I curated this book of stories full of stories from the Huntington's community. The book features stories from 25 people from 9 countries from a wide range of perspectives. From people who are gene positive, gene negative or untested. People who have had families...
20 Questions with Help 4 HD
Help 4 HD International asked me 20 questions about living with Huntington's disease in the family. Why did you decide to get tested? What is your biggest struggle? If you had the world's attention for 15 seconds what would you say? You can read the whole article on...
Appearances
December 2025: One Family One Wish Virtual Event
My daughter and I have been invited by Jimmy Pollard to speak at this years "One Family One Wish" virtual event. Every new year's eve Jimmy hosts this event and people from all over the world tune in to participate and watch. We share our accomplishments, our...
November 2025: Speaking to the University of Toronto Genetics Students
I have been invited again this year to share my experience with the genetics students at the University of Toronto. It is so important to engage with people early in their careers to help them understand the real-life implications that genetic testing can have on...
November 2025: Speaking at IGM in Toronto
Living with a chronic or serious illness affects more then just our physical health, it impacts our mental health as well. I am so grateful for the opportunity to speak at the IGM Financial Inc. DiverseAbility Business Resource Group to speak about how to embrace...
October 2025: Guest Speaker at HSC Annual Conference in Toronto
I have been invited to speak at the Huntington Society of Canada's annual conference. I will be speaking on October 31 at 2pm EST on a panel called The Virgin River Effect: How to use storytelling to raise awareness, funds, and hope for Huntington disease. Find out...
October 2025: Speaker at Buffalo’s Education Day
I have been invited to speak in Buffalo for an education day sponsored by the Huntington's Disease Society of America. I will be sharing the realities of being a caregivers for someone living with HD - from the emotional impact and daily challenges to the moments of...
June 2025: Know Rare Authors in Rare Disease Series, Guest Speaker
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...
Happenings
Breakfast on Parliament Hill
This was a first for me! I had the opportunity to have breakfast on Parliament Hill with some MP’s and the deputy speaker of the house today. They invited members of the rare disease community to share their experiences and concerns. I spoke to Tom Kmiec and even had...
Nominated for Canada’s Top Mental Health Advocate Awards
I am so excited to let you know that I have been nominated for Canada's Top Mental Health Advocacy Awards presented by Reach Out Together. Here is what the nomination committee wrote: "Rare disease advocate, author, and speaker, Erin is redefining resilience. Living...
Want to Share Your Rare Disease Story?
You don’t have to be a writer to be in my next book - you just have to have a rare disease story to tell. Everyone involved will go through story development and coaching as part of the writer development program. You can find out more this opportunity by visiting my...
Support for Huntington’s Disease Heroes Book
We have received so many beautiful endorsements for my new collaborative book - Huntington's Disease Heroes. I am truly touched by how the Huntington's community has come together to support the book. These moving stories of real people affected by Huntington’s give a...
Collaborative Books – We Want to Hear from You!
Did you know I own a publishing company called Lemonade Press? We are currently accepting applications for custom collaborative books for publication in 2024. If you are a member of an under represented medical or rare disease community and have an interest in...
Huntington’s Disease Heroes Press Release
FOR IMMEDIATE RELEASE Rare Disease Community Comes Together to Release Book for Rare Disease Day, February 28 Sharing Stories from an Underrepresented Rare Disease Community February 23, 2023 — Toronto, Ontario, Canada Huntington’s disease has been steeped in...
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