Educational Videos

The Power of Self Publishing

Introducing Sarah Schuster 01:51
Backstory on The Mighty 04:41
Best tips for submitting your story to The Mighty 06:46
What is meant by the “power of your story” 10:56
What are other venues for patients to share out their story and perspective? 14:06
Introducing Kris Kelbrants and Sherry Shuss 16:39
Kris’ experience with CNS vasculitis 21:58
The importance of keeping a journal during Kris’ illness 29:08
The process of collaboration to write the book 31:52
Setting aside time to write the book 34:29
Challenges in writing and self-publishing a book 39:06
What you do after the book is written 43:39
The emotional impact of writing your story 45:22

How many times have you said to yourself that your experience with vasculitis would be a powerful article, or even a book? How do you begin the process of self-publishing your story? What online venues might feature your article?

You’ll get those answers in this exclusive webinar featuring a conversation with Sarah Schuster, Editorial Director with the online publication, The Mighty. She will give you tips and ideas on how to capture and share your experience in a way that captures readers’ interest.

You will also learn the amazing story of Kris Kelbrants whose CNS vasculitis left her with gaps in her memory as she struggled with the disease. Her mother, Sherry Shuss, kept detailed notes and journal entries throughout her daughter’s treatment and rehabilitation. They decided to write and publish a book, Maze of Thorns, not only to share with the public, but also as a way for Kris herself to understand what she experienced–but doesn’t remember.

Find out the challenges and solutions in writing, editing, and sharing your own story to a worldwide audience through self-publishing.

Writing, Editing, Publishing and Promoting Your Story

Brandon Introduction 01:54
John Fries Introduction 02:50
How Brandon got the idea to write a book 03:33
How Brandon and John collaborated to write his book? 05:20
Editing and enhancing the raw material into story form 06:52
Finding a common narrative thread to pull the stories together 09:09
How does someone start the process of organizing a lot of information into a cohesive story? 11:11
Using a timeless template based on a classic idea? 11:45
Ask yourself: Who am I writing for? Who is the audience? 13:22
Telling your story many times without boring your audience. 15:01
Getting your story from your desk into local media. 16:34
Pitching your story idea to an editor or producer 19:12
What editors want to hear about your story 21:41
Don’t be star struck, or nervous if you’re interviewed. 25:21

No doubt, that Brandon Hudgins has an extraordinary story to tell. However, he quickly learned the process of capturing, writing, and publishing that story was not an easy one. Brandon teamed up with professional communications consultant, John Fries, and the two of them became a creative collaborative team that resulted in a self-published book on Amazon.

In this inspiring webinar, John and Brandon explain their challenges, solutions, and tips on creating a book from scratch to having it published to a worldwide audience.

In addition, you will learn how you can raise awareness about vasculitis by publishing your story through the local media.

Preparing for an interview

Beth Howe has done several media interviews to raise awareness about vasculitis. In this short webinar, Beth shares advice on how to best tell your patient story should you have the chance to be interviewed on radio and TV.

How I turned my personal notes into a published book

Eileen Radziunas kept a journal and notes detailing her experience of trying to get a diagnosis for her symptoms. After getting a diagnosis of Behcet’s Disease, Eileen turned those notes and journal entries into a self-published book intended to help other patients understand the challenges she encountered.

In this webinar, Eileen talks about the three most important lessons she learned about the process of self-publishing one’s story. Her candid, inspiring advice will hopefully inspire other patients to write and publish their own story.