Huntington’s Disease Superheroes Need Your Help

We are raising funds to publish a book of stories written by everyday heroes in the Huntington’s disease (HD) community.

 

The book will be filled with stories about people like:

• Judy – a mom from the USA and a seven-time Boston marathon finisher who credits running for helping her keep her sanity

• Ashley – a young woman from the UK who is at risk for Huntington's Disease. She is a care giver for her father and believes in living a fun life even with HD as a part of it.

• Tam – a scientist from Canada who switched from cancer research to studying HD after finding out her mom had tested positive for the disease

• Plus 22 more inspirational stories

 

The book won’t shy away from sharing the hardships we have been through, but it will also show the good things that have come from this diagnosis, the lessons we have learned, and the ways we find joy. There are so many wonderful people in the HD community and we want to showcase the amazing ways they are living their lives.

 

More importantly though, the book will connect us all together. So that we can see ourselves in those stories and see how we are all HD heroes in our own ways.

 

THIS BOOK WILL CHANGE PEOPLE’S LIVES!

 

It will

• give a voice to the HD community by telling our stories in our own words,

• take the fear and stigma away from living with HD,

• control the narrative of our experiences living with HD in our families,

• help people who are going through the same struggles, and

• connect us as a community.

 

Twenty-five brave people will step up to publicly share their stories. By making a donation you are giving them the experience of a lifetime.

 

They will not just be writing their stories; they will be going through a specialized story development process. The writers will get one-on-one writer coaching and learn the craft of storytelling. These are skills they can take forward with them and use in the future as they continue to spread awareness for HD.

 

We asked our writers – Why do you want to be a part of this book?

 

 

A Note from the Lead Author and Project Co-ordinator

 

Hi, my name is Erin. I tested gene positive for Huntington’s disease when I was 32. Sitting in the genetic counsellor’s office, in the moments after receiving that devastating news, I knew my life had been changed forever.

“What am I supposed to do now?” I asked the counsellor.

“Just go on living your life,” she said. But the problem was I had no idea how to do that.

 

I fell into a deep depression and struggled to get out of bed each morning. I was afraid to be anywhere alone because my mind would start racing and I would fall into a panic. I doubted my value as a person and feared my husband would leave me. I didn’t know whether I should have kids.

 

The only thing I was sure of was that I didn’t want that news to ruin my life. So I actively started trying to gain control of my life so I could find happiness again. It took a while but I am proud to say I have come to terms with my status and I am living a joyful life.

 

I understand the isolation many people feel because they are living with a rare disease in the family. That is why I want to publish a book filled with stories written by people in the HD community. Our stories are important, and I wanted to create a space for our voices to be heard.

 

 

Erin Paterson is a published author, public speaker, and HD advocate. Find out more about her at https://www.erinpaterson.com/bio.

 

More Details About the Book – The book will be made up of stories from 20 people in the HD community with different perspectives. First-person stories from people who have tested gene positive, who have tested gene negative, or who have decided not to test. Stories from young carers and families living with juvenile HD, scientists, genetic counsellors, HD advocates, and more. We want to share a wide range of experiences.

 

Find out more about the book here

https://lemonadecommunity.com/for-writers

 

Funds Raised Will Be Used for . . .

 

Specialized Writer Coaching Program

• All writers will be coached through the writing process, with one-on-one calls and emails as well as story development coaching.

 

Professional Services

• Editing and proofreading

• Cover design and book interior design

• E-book formatting

• Book marketing text for online sales

• Book copyright

 

Online Distribution

• The book will be distributed globally, including on Amazon worldwide and through other retailers such as Indigo and Barnes & Noble.

• A portion of book sales will be donated to an HD-related charity.

 

Marketing Support

• Custom social media graphics

• Marketing book video

• Marketing guidebook

• Social media training

 

Huntington’s Disease Heroes will be a high-quality book you will be proud to support.

 

About the Publisher

Lemonade Press is more then just a publishing company. We are a social enterprise focused on empowering people through storytelling. We publish high-quality anthologies from underrepresented medical and rare disease communities. 50% of proceeds from the book sales are donated to charity.

 

To find out more about Huntington’s disease visit:

Huntington’s Disease Youth Organization at https://en.hdyo.org

Huntington Society of Canada at https://www.huntingtonsociety.ca

Huntington’s Disease Society of America at https://hdsa.org

#HDHeroesBook

Instagram            @erinpaterson_allgoodthings and @lemonadepressbooks

Facebook             https://www.facebook.com/ErinPatersonAllGoodThings/ 

LinkedIn               https://www.linkedin.com/in/erin-paterson/

 

Thank you so much for your support!