Publications & Appearances
Podcasts
Articles
Featured
Appearances
Happenings
Podcasts
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...
Huntington’s Disease and One Woman’s Relentless Search for Happiness on the Sickboy Podcast
At a time when people didn’t want to talk to me about the scary feelings I had about Huntington’s disease the @sickboypodcast was there for me. They were having the conversations I longed to have with people in my life. They were taking about death and illness and...
Articles
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...
Visiting Wave Life Sciences as a Patient Advocate
When you spend years of your life hiding something (that Huntington’s was in my family) that feeling of shame sticks with you. Even after I made the decision to stop living in secrecy it was still there, accompanied by a huge amount of fear. So every opportunity I...
I Have a Rare Disease, Well Not Quite Yet
I have a rare disease, well not quite yet, but I live with Huntington’s every day. I am gene positive for Huntington’s which means I will get the disease one day I just don’t know when the symptoms will start. That can make it hard to fit in. I have this bad thing...
My Dad featured on HD Reach
Amazingly my dad just turned 80 this year. He has late onset Huntington’s. His symptoms didn’t start until he was in his late fifties, although it is only in hindsight that I can say this. I didn’t know what was going on at the time because HD was kept a secret in my...
The Rare Spotlight: Erin Paterson telling the world about Huntington’s
I kept my diagnosis as gene positive for Huntington’s disease a secret for over ten years because I was afraid of how people might react. I thought I would lose my job, I didn’t think people would want to be friends with me any more. I was terrified of ending up...
Embracing the Huntington’s Community
I had chosen a seat towards the back of the conference room because I noticed the legendary Jimmy Pollard sitting there. I didn’t want to miss the chance to sit next to this Huntington’s disease (HD) advocate and all-around amazing person. I was at the Help4HD...
As Featured In
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...
An Excerpt from All Good Things on WeHaveAFace.org
If you would like to read an excerpt from my book, All Good Things, you can do so on WeHaveAFace.org
Appearances
April 2025: Speaking at the HD Reach Education Conference
I will be speaking on a number of panels at the HD Reach Education Conference in North Carolina. The theme of the event is storytelling and there will be a number of published authors at the event including my daughter who wrote a children's book about HD. The event...
November 2024: Speaking about Hope at the HSG Family Day
I am so excited to let you know that I have been invited to speak at the Huntington Study Group's annual meeting again this year. I will be speaking on a panel with Charles Sabine on the subject of HOPE. I will be speaking on Saturday November 9th, 2024 I will also...
March 2024: Speaking to the Wave Life Sciences Staff
I have been invited to Boston to speak at the Wave Life Sciences offices next month. I will be representing the Huntington's community and speaking what it is like to live with Huntington's in the family. Wave Life Sciences is a biotechnology company working on...
December 2023: See you at Wish!
See you at Wish 2024! I will be at this event hosted by Jimmy Pollard. It is an amazing event where HD families worldwide have the opportunity to share their stories and make a wish for the HD community for 2024. If you would like to attend you can reach out to Jimmy...
November 2023: Guest Speaker at the Huntington Society of Canada National Conference
The Huntington Society of Canada is having their first national conference in five years. I am so excited to be there. I will be speaking on a panel with other community members about raising awareness for Huntington's Disease. I will also have a table with copies of...
November 2023: Keynote Speaker – Huntington Study Group’s Annual Meeting
I am so excited for this! I will speaking at the Huntington Study Groups annual meeting in Arizona this November. It is a three day event. I will have a booth with copies of my latest book Huntington's Disease Heroes. You can catch me speaking on Saturday November 4th...
Happenings
November 2024: Speaking about Hope at the HSG Family Day
I am so excited to let you know that I have been invited to speak at the Huntington Study Group's annual meeting again this year. I will be speaking on a panel with Charles Sabine on the subject of HOPE. I will be speaking on Saturday November 9th, 2024 I will also...
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...
March 2023: Huntington’s Disease Heroes Book Available at HDYO Congress
As you may know my second book, Huntington's Disease Heroes, was recently published. We will be having a booth at the upcoming HDYO Congress in Glasgow Scotland - March 17 - 19, 2023 Pop by the booth to say or pick up a copy of the book. Some of the other contributors...
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