Emma Rooney

I first took-up the role of storyteller as a child while playing school in the basement, during the summer holiday with my younger sister. I’ve maintained the role until today by always carrying a basket of books while working with children and youth in community gardens. My storybook collection remains my most treasured possession. My favorite story is “Brundibar,” by Tony Kushner and the late Maurice Sendak, a tale of two young siblings on a quest to fetch milk for their sick mother.

It seemed only fitting that I would work with my sister, who is an artist and illustrator, to create a digital story of my childhood with type 1 Gaucher disease, a rare genetic condition that I was diagnosed with at the age of three. The story, “Emma’s Garden: Growing with Gaucher,” was made as a gift to our parents to honour their vital care and with the hope that sharing our family’s journey will encourage others in the rare disease community to do the same.

Running RareI believe that rare disease stories really matter to raising awareness, to education, and to connecting the community, but I also know how challenging it can be to tell your story. I can feel my heart racing just thinking about having to get something personal down on paper. While I keep returning to writing as still the best tool at my disposal for expressing myself, I’m excited to be learning more about digital storytelling and audio narrative. This forging of new storytelling paths will be shared.

As an avid runner, I always find my best storytelling inspiration while out on the trails. My body may in fact be running on stories and as a guest blogger for Global Genes, I hope to share my energy source while offering storytelling advice for individuals and patient organizations.

As I try to understanding the expanding role of storytelling in the global rare disease community, my monthly posts will showcase a diversity of talented storytellers, explore the popular platforms being used, unpack the types of stories being told, and draw attention to the important missing voices. I hope you’ll join me at the storytelling circle and find new support for putting your rare disease story out there.

Watch Emma’s digital story and follow at My Invisible Life. You can add her on twitter and or tweet about her series #RunningOnStories


Running on Stories: A Different Kind of Marathon
The Challenge of Blogging While Sick Recognizing the Effort of Storytelling & Working With It   By Emma Rooney @blumencasey   Throughout… Continue Reading
Running on Stories: Why Storytellers Shouldn’t Shy Away from Asking for Help
Ever on a quest to better understand how rare disease stories get made, I became fascinated watching Strangers give a chance at life which… Continue Reading
Running on Stories: What’s Your Storytelling Method?
Have you ever been asked to contribute a story, about living with a rare disease, and even though you want to support the cause, you just… Continue Reading
Running on Stories: Flashing “Share Your Story” Is Not Enough
Growing a community of connected rare storytellers needs support With the Internet already a real presence for more than half of my life,… Continue Reading
Running on Stories | Emma Rooney
Emma Rooney: Running on Stories I first took-up the role of storyteller as a child while playing school in the basement, during the summer… Continue Reading