“My Normal” Becomes a Reality: National Gaucher Foundation of Canada Succeeds with PAL Project

Cara Hesse | September 17, 2013

In 2011, the National Gaucher Foundation of Canada was one of 11 organizations around the world to receive a Genzyme PAL Award. The NGF’s vision for their PAL project was straightforward but ambitious – to develop a tool that would help inspire, connect and empower children around the world who are living with a rare condition. Developed by NGF board member Emma Rooney, Emma’s own experience growing up with Gaucher disease served as the inspiration behind the idea. Her firsthand knowledge of how rare disorders can alter and shape childhood experiences ultimately led her to the creation of “My Normal,” a kid-friendly platform that encourages children to share their story with others. 

The project took one-and-a-half years to develop, from its concept to the launch this past February at the Lysosomal Disease Network’s WORLD Symposium in Florida which provided the chance to bring a patient perspective to a medical science audience. The first story on “My Normal” website was Emma’s Garden, a ten minute digital story created specifically for the project, about Emma’s experience growing up with Type 1 Gaucher disease. The site provides a safe and easy to use platform for people of all ages and countries to share, using the creative medium of their choice, their own stories of being a kid with a rare condition.

"The greatest impact of this project is in helping to remove the barrier of isolation that children who live with a rare disease face; by providing a safe place for children to share their experiences we can raise awareness and educate people and at the same time provide a healthy outlet for self-expression to those in need,” said Christine White, President of the NGF of Canada.

 

Though the creation process was expected to take eight months from the start to finish, like many projects it took much longer than expected. As Emma explains, there were really two big challenges. “In order to bring the story together, I had to learn quickly how to be a writer, an artist, a video editor, a web developer and most importantly a collaborator. The second challenge for me was around telling my own story, and telling it in a compelling and authentic way using a digital format. It’s hard. We all have a great story to offer but it can be an emotional process to get to it and then, an even greater obstacle is finding the confidence to share it publically, something we may be used to living with, but not used to exposing.”

The large team included Emma as storyteller and project lead, an illustrator (her sister Megan), a story editor, a video editor, web developers, translators and a medical advisor, all of whom worked with Emma and the NGF to enrich the project. The project cost approximately $13,000 Canadian dollars, with just over half the funds coming from the PAL Awards. The bulk of the costs were spent on honorariums for contributing artists, website development and outreach activities. 

Now that the site has been live for several months, Emma and the NGF appreciate the challenges that still lay ahead. As she says, “At the start, our goal was just to launch, but since then, we have come quickly to realize that putting something out there, on the Internet, is not enough. Our sense is that people want to share their stories but don’t know how to do this and are afraid of not doing it well. I understand that. Creating a platform for sharing also needs to be accompanied by resources that empower people to undertake the task. For this reason, we are organizing a storytelling workshop at the upcoming NGF of Canada family conference in October and out of this, a simple how to guide will become available on the website providing tips for creating your own story.”

The NGF developed a set of metrics to measure the success of their initiative. Some of the metrics they are using include the number of individual stories posted to the site after one year, the number of unique visits made to the site, the number of views for Emma’s Garden and the number of email responses generated by the project. 

Emma’s Garden plays in English and French, with Portuguese subtitles now available, and the video has received over 2,000 views on YouTube. The My Normal site has had over 1,000 visitors. Emma and the NGF have received countless encouraging emails from around the world that express people’s appreciation of the project and its resonance. Despite these real successes, the lack of story contributions to the site continues to be challenging but is also serving to form their strategy for outreach and long range sustainability.

“Winning the PAL award has helped the NGF fulfill its mission to improve the health and well-being of Canadian Gaucher patients through community building and education,” said Christine of the NGF. As for advice for patient organizations interested in submitting a PAL Award proposal, Emma says it’s critical to identify who wants to be involved from the start. “Buy-in from the project team will allow not only for a stronger proposal but also ensure you’re picking the right project. It might also be a great opportunity to engage the broader community, beyond patient group leaders, to discover talents and interests in your community that could be engaged in such a project,” she says.

The NGF is excited about adding additional functionality to the site, including video captioning and translation to increase accessibility. According to Emma, Gaucher Awareness Month in October will provide a great opportunity for further promotion of the project, as well as 2014 Rare Disease Day! For more information, please visit National Gaucher Foundation of Canada and My Normal Project.  For more information about the My Normal project and how your group can get involved contact info@mynormal.ca.

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