Share Their Your Story

Many family members and friends of the bleeding disorders community have experienced the loss of loved ones due to inherited bleeding disorders and their related complications.

Sign up for this very special opportunity to film their story Rick Waines & Rob Cooper from "Unspeakable".

Sign Up!

  • Spaces are limited. You must sign up in person to reserve your spot.
  • Sign up after “Unspeakable” Let’s Talk About It (Thursday, April 13, 4-5 pm in Peninsula 1-3). After this session, we will continue taking sign-ups in Merritt 1-2.
  • Filming will take place on Friday and Saturday, April 14-15th in Merritt 1-2.

Instructions for Filming

  • Arrive 5 minutes before your scheduled time.
  • All participants must sign release form.
  • Introduce yourself, where you live, and what your connection is to the bleeding disorder community.
  • If you are remembering someone you have lost, introduce them, and what your connection was to them.
  • What you would like to share about your survival or the loss of the loved one you are memorializing. Please share something that will help people connect with that person.

Questions to Think About

Less is more. Don’t try to tell us everything about your story or the person you are remembering. Tell us something specific.

  • What is your favorite memory of them?
  • Is there a funny or meaningful story you can share?
  • Do you have a favorite keepsake, art or photograph you can bring to Orlando to show us?
  • Is there a possession of theirs that you have that is meaningful? Can you show it to us?
  • Do they/you have a favorite spot where you like to remember them? Can you take us there using words alone to describe this place? (update on website)
  • Can you tell us their/your most meaningful aspect of their journey with their/your specific bleeding disorder?

These are only suggestions, this is your memorial, your story of your loved one or your own survival. Tell us what is important to you.

A Special Message from Rick & Rob

Memorial art can help us to understand these losses. We are fortunate to have an opportunity to remember our loved ones and honor their memories on film.

Sign up at Symposium for a time to share their story with Robert Cooper and Rick Waines. By contributing to this project, you will not only shine a new light on the members of our community who have passed, but you will also help the next generation better understand its history, which can help them manage their own challenges living with a bleeding disorder. Anyone can participate in this project!

The videos can be from people with inherited bleeding disorders who have experienced the loss of community members, or caregivers, friends and family members of a person who has passed. This is also a chance to celebrate our community’s resiliency. Are you a member of the bleeding disorder community that lived through the tainted blood years? We want to hear these stories, too.

Share your story, or that of a person who has passed as a direct or indirect result of their inherited bleeding disorder. All forms of expression are welcome; stories, poems, lyrics, art, music, etc.


Rick Waines, Playwright, Vice-Chair, Canadian Hemophilia Society – National
Robert Cooper, Creator, Unspeakable (TV mini series), CHS Board Member – National

Watch this example from World Federation of Hemophilia 2022 Memorial Video virtual submissions.