Publications & Appearances
Podcasts
Articles
Featured
Appearances
Happenings
Podcasts
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...
Caring for a Loved One with Huntington’s Disease on The Podcast by Kevin MD
Caring for a loved one with Huntington's Disease and carrying the gene myself can be a difficult road to travel. I was so grateful to have the opportunity to discuss this and many more important topics on The Podcast by Kevin MD....
The Release of the book Huntington’s Disease Heroes on We Have a Voice Radio
The support for my new collaborative book (Huntington's Disease Heroes) has been amazing. I was so fortunate to be able to speak about it on an episode of We Have a Voice with host Kevin Jess. Listen Here
Talking about my New Book on Help4HD Live
My new book - Huntington's Disease Heroes - was recently released and I am so grateful I had the opportunity to speak about it on Help4HD Live. I spoke with host Lauren Holder about how the book came about, the amazing people who shared their stories in the book, and...
The Impacts of a Rare Disease on the Rarely Heard Podcast
I was so happy to be interviewed on the Rarely Heard Podcast as a part of their "Talking in Tandem" series. I was interviewed about my experiences living with Huntington's disease in the family and then for the second half of the episode Clare Gibbons from North York...
Huntington’s Disease Heroes Book on We Have a Face TV
I was interviewed by Kevin Jess on We Have a Face TV about my upcoming book, Huntington's Disease Heroes. Not only did we speak about some of the inspirational stories that are going to be in the book, we discussed how important it is for us to be able to share our...
Articles
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...
The Heartbreaking Realities of Being a Caregiver with HD
These days as my father’s Huntington’s disease progresses and I take on more and more, I have learned how quickly being a caregiver can consume my life. Yes, he is still living two hours away and I don’t take care of his day-to-day needs, but I do everything else for...
As Featured In
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
You Are Not Alone: An Anthology of Perinatal Mental Health Stories
A story I wrote about infertility and post adoption depression was chosen to be a part of this wonderful anthology released by The Canadian Perinatal Mental Health Collaborative. If you would like to pick up a copy of You Are Not Alone: An Anthology of Perinatal...
My Story Accepted to Snapdragon: A Journal of Art and Healing
I am so proud that a story I wrote called "The Fall" was accepted to an online literary Journal. The piece appears in the Fall 2020, issue 6.3 themed Empty/Enough. This is a longer story, 1933 words, which meant I was able to go into more depth about the subject...
Not Cancelled: Canadian Kindness in the Face of Covid-19
I am thrilled to let you know that my story "Cupcakes and Crafts are Not Cancelled" was published the book Not Cancelled: Canadian Kindness in the Face of Covid-19. This anthology is full of inspiring stories collected from across Canada during the Covid -19 pandemic....
Our Story Featured in Huntington Society of Canada Newsletter
It took me a long time before I felt comfortable talking about Huntington Disease and infertility. In January I was interviewed by the Huntington Society of Canada. I am so pleased to tell you that the story of how we came to create our family appears in this months...
Family Planning and HD
I was happy to collaborate with the Huntington Society of Canada on this month's issue of "Strength & Knowledge". The fact sheet shares different ways of creating a family when you are at risk for Huntington Disease. Figuring out how to have children can be a...
Appearances
June 2025: Speaking at a Storytelling Event for Women
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...
May 2025: Speaking at the Vanderbilt Support Group
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...
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...
February 2025: Book Signing, Southeast Huntington’s Symposium, Nashville TN
We will have a table selling our books at the Southeast Huntington's Symposium in Nashville on February 8th. This annual event, hosted by Vanderbilt, brings together Huntington's disease professionals from across the USA to share knowledge, collaborate and learn how...
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...
Happenings
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...
Huntington’s Disease Heroes – An Anthology of Stories from YOU!
I have been working on an exciting new project! Last month I launched Lemonade Press and now we are working on our first anthology. Here is a little bit more about it. Are you a member of the Huntington’s disease community? Do you want to share YOUR story? After I was...
BIG NEWS!!! Publishing Company Launch
BIG NEWS!!! Have you experienced the POWER of books? After I was diagnosed as gene positive for Huntington’s disease I fell into a deep depression. I could hardly get out of bed each morning. I was afraid to be anywhere alone because my mind would start racing and I’d...
Book Fairy Christmas Tour
Copies of All Good Things are being hidden by book fairies all across Canada for people to find. If you live in Thunder Bay, Calgary, Toronto, Saskatchewan or Montreal keep an eye out for free copies of my books.
BIG NEWS COMING SOON!
I have been working away on an amazing project that will empower and connect people experiencing hardships in their lives. I can't wait to share it with you. More details will be coming out next week!
Virtual Book Launch – PODCAST TOUR
You can catch me a bunch of podcasts as a part of my virtual book launch podcast tour. Listen now to Help 4 HD Live, We Have a Voice, Between the Lines and Embraced Simplified. Coming out soon, HD Insights, Kevin MD and Hot Mess to Awesomeness
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