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Eczema Storyteller Project

Changing young minds and building empathy through the ancient art of storytelling.

Photo of Korey Capozza
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Please elaborate on your proposed solution to the challenge in no more than 300 words.

Storytelling is a deeply rooted human tradition. Cultures use storytelling to teach ideas, morals and lessons in a way that builds empathy. Storytelling helps children understand people’s differences and to connect emotionally with their experiences. Lessons learned through stories are then applied to children’s own realm of experience. We propose a project to develop a storytelling curriculum for school age children related to the experience of living with eczema. Working with parents, children and a professional storyteller, we will create a series of stories that help children understand what eczema is, how it impacts children and families, and how they can support their classmates that may have the condition. We will work with 5 elementary schools in the U.S. to field test and improve the stories. The stories will help primary-school age children better understand children with eczema and to empathize with their experience. It will empower children with eczema to share their experience by hearing the characters in the stories tell theirs.

What is the name of your organization?

Global Parents for Eczema Research

Where are you and your organization based?

Los Angeles, CA, USA

Please provide a description of your organization.

Global Parents for Eczema Research, or GPER ("geeper") is a global network of parents of children with moderate to severe eczema focused on improving quality of life for children with the condition through research and innovation. We are grassroots, democratic in structure and parent-led. We operate on principles of inclusion and collaboration and believe patients and families should be partners in the process to find the best solutions for children with eczema.

What is your name?

Korey Capozza, Keri Kelley, Armando de la Libertad, Christy Cox, Angela Anderson-Fox, Mel Thompson, Amanda Lopez, Ashley Ellis, Allison Piluso, Heather Sullivan

Tell us about your organization, or the organization you are partnering with: What inspired you to participate in this Challenge (300 words or less)?

Global Parents for Eczema Research is a parent-powered collaborative comprised of families that include children with moderate to severe eczema. We were inspired to participate in this challenge by the parents in our group who volunteered to work on solutions together and came up with this idea based on their experiences caring for a child with moderate to severe AD and the experiences they have had with bullying. Inspiration came from the authors' own experience and from the desire to improve quality of life and acceptance for all children impacted by eczema.

Building on your initial proposal in the Ideas Phase, please share additional information on your solution to the challenge in more detail (500 words or less).

We expanded our initial team of 5 parents to a larger of 12 to ensure broad feedback and adequate vetting. We posted our ideas to our Facebook Group which includes 1300 parents worldwide. After further discussion and wider input, we refined our proposal. Our proposal aims to take a preventative approach to bullying by reaching children in their formative years before visible differences become reasons for anti-social behavior. It is grounded in the theory that bullying stems from fear and lack of understanding. We chose a storytelling approach to address this challenge because we feel it’s important to reach young children during the crucial early years when their minds are open before the challenging years and social pressures of adolescence. Working with a professional storyteller (I.e. Baba the Storyteller), we will together craft a compelling story targeted to 5-10 year olds based on the experiences of a child living with moderate to severe AD. The story development team will include parents, the storyteller and school age children. Drafts of the story will be reviewed and refined by the parent and child participants to ensure accuracy and resonance. We will produce 150 hard copies of the story for distribution to school libraries and counseling offices in our partner countries (US, Canada, Australia, UK, and Kenya). The story can be read by school staff or directly by children. Coloring pages and comprehension components that allow for emotional intelligence exercises (How does it feel to be different? How does it feel to be accepted?) Additionally, we will produce a YouTube video version of the story told by the professional storyteller to a group of school age children. This approach will also ensure that the story is available in a variety of formats to accommodate both visual and auditory learners. If possible, we will translate the story into Spanish. Most people have heard of eczema, however, are unaware of severe cases. A story based on a moderate to severe case would be beneficial in sharing the real struggles that one may encounter just to get through a typical day. We would include some basic statistics so teachers and adults are comprehending the magnitude also but our project is child-centric first. Distribution will be led by members of the project team who represent: a) a patient organization b) school psychiatrist (US) c) a grade school teacher (Australia) d) parents of children with moderate to severe AD. Our proposal has the advantage of input form a multi-disciplinary team that was united by our committed to improving the lives of children with AD.

Please share more information on the steps you’ll take to make sure the project is a success (500 words or less).

We anticipate a 7 month project with the below steps and timeline: Step 1 (4 weeks): We will convene an advisory committee of parents and children to help draft the story with the professional story teller. For example, the story may explain what eczema is and is not (I.e. not contagious, not dirty, etc) in a child-friendly style and offer some truths from a child’s point of view as they deal with daily routines, challenges at school/play, appointments, hospitalizations, rashes, bullying, treatment from family/friends and strangers. Step 2 (3 weeks): We will pilot test the story virtually with a group of school age children from each country to determine comprehension, acceptability, engagement, and effectiveness. Step 3 (3 weeks): We will edit the story as needed based on feedback. Step 4 (2 weeks): We will engage a videographer to film the storyteller to perform/tell the story to children, capturing their responses. Step 5 (4 weeks): We will recruit our ambassadors and work with them to develop an outreach plan to schools in their respective countries Step 6 (4 weeks): We will publish and distribute the story via schools, libraries and the social Web. Step 7 (4 weeks): We will evaluate our project using the metrics outlined below.

How is your idea scalable (300 words or less)?

We will scale our impact through two approaches. 1) By using an ambassador approach to reach schools and libraries in several countries 2) By actively promoting our Storyteller Video on YouTube both through our parent network, but also through paid advertising and promotion to reach the widest possible audience. We propose to identify 4 storytelling ambassadors in each country to ensure that our "book" and video are shared in at least 5-10 schools in each country. In the US, we will also leverage our connections to the American School Counselor Association and the National Association of School Psychologists, to which one of our team members is a member. For example, if we reached 10 schools in 10 countries attended by 200 students per school, we would reach 20,000 students reached. Further, we will roll out our storytelling video in concert with World Eczema Day Sept 14th and will cross-promote across promotes and countries to ensure reach.

How would you know if your idea worked and how would you measure it (500 words or less)?

We will evaluate our project using several approaches. First we will invite teachers at participating schools to tell us via an online survey how effective our stories were in raising awareness and understanding of eczema (using a Likert-type scale). Second, we will assess our reach by tracking distribution of our materials, documented use in schools, and number of children reached. Finally, we will track views, likes and shares of our Storytelling video using platforms such as YouTube channel / video, Facebook, Twitter and other options. We anticipate several barriers to success. Below are these barriers with our proposed response: a. Barrier: Schools may not let us in. Response: We will take a grassroots approach to get our members involved in direct outreach w/their local schools. b. Barrier: A global effort may be challenging. Response: Fortunately, our members are in 5 different countries c. Barrier: Replicating the model without long-term funding will be difficult over time. Response: We are planning a digital version / archive that can be accessed well into the future. d. Barrier: Teachers already have a lot to cover, so adding 1 more thing to their plates may be difficult. Response: We will make the story engaging with broader lessons and ensure that it can be accessed via YouTube outside of the school setting as well.

During the Ideas Phase, you estimated how much your project will cost. Please update if this estimate has changed?

  • $10,000 or more

Please share more information on how the grant funding will be used to bring your idea to life. Please provide an itemized budget. (500 words or less)

Professional Storyteller fee: $5,000 Videographer: $4,000 Printing: $500 Online marketing/advertising: $2,000 Project Management: $5,000 Mailing/Shipping: $300 Total Budget: $16,800 Total Request: $10,000

If available, share prototypes, images, sketches of how you created your idea, including a timeline of how your idea will roll out (optional).

Baba is the inspiration behind our idea. https://babathestoryteller.com/ https://www.youtube.com/user/BabatheStoryteller

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Photo of Innocent Temba
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Hello korey capozza,
Kindly am curious to know about the tools which you would use to develop those stories?

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