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Authentic voices from the frontlines: A teen and youth-led education and awareness campaign to combat eczema myths and build empathy.

A youth-led social media movement to tackle misconceptions about eczema.

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

Youth and teens with eczema who experience bullying intimately and personally understand the form that it takes and the language that is used. How youth and teens talk about eczema and help their peers understand it is unique to their age and peer group. Yet efforts to address bullying or build awareness are often developed by adults and/or people who don't have the condition. We see this as a major shortcoming of past efforts and a current gap. Therefore, we propose a youth and teen led effort to address bullying by building awareness about eczema via youth and teen preferred platforms and modes of communication. Options that have been identified by our workgroup of youth and parents include: Tik-Tok videos, songs/raps, animated short, and/or viral video campaign to address myths about eczema. Messages and format will be developed and authored by a team of youth and teens with eczema. A coordinating social media campaign will promote the cross-platform effort. Our initiative will empower youth and teens by putting them at the center of developing a solution for bullying and will empower other youth and teens to speak up because the campaign will feature their peers. Our solution is grassroots and invites the “experts” and even parents to take the backseat so that young people with eczema can lead the way.

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. Brianna Cox (age 14), Christy Cox, Kyle Bruner (age 17), Elio Taha (age 10), Jenn Johnson, Rachel Rachel, Armando de la Libertad, Sarah Pry, Christine Pham Cutaran, Amanda Lopez, Vanessa Byrnes.

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.

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).

Because bullying often occurs during the teen/adolescent years, we propose a project to reach young people in this age group via communication platforms that they already use and in their own language. We will convene an advisory committee consisting of seven 12-17 year old adolescents/teens and seven adult mentors. Participants will represent a range of countries including the US, Australia, Kenya, Canada and Europe. (All of these countries are represented on the project team that developed this Challenge idea). Meetings will be held virtually using video conferencing software. Working with a videographer, the team will storyboard ideas for short video posts that communicate a variety of topics relevant to the issue of bullying including: a) What eczema is and what it's like to live with it b) Myths about eczema c) How bullying impacts people with eczema d) Responses to bullies. The tone, length and messages in each video will be tailored to the platform used (I.e. SnapChat, TikTok, and Instagram). For example, a humorous video may work best with a platform like TikTok. Teens on the team will produce the videos using the language, effects, music etc. of their choosing. Video shorts produced with the videographer will be pilot tested with a group of peers (with and without eczema) to obtain feedback and suggestions for improvement. The team will then edit and finalize the videos. A secondary goal of this project is to build confidence and leadership among participating teens who will benefit from sharing their experiences and ideas, having them endorsed and featured by a professional videographer, and ultimately shared with a broad audience. New connections and friendships with peers from across the globe is another benefit of participation in this collaborative effort. The teen team will help recruit "monitors" in different geographical regions to engage with comments and lead "clusters" in the case of SnapChat. If possible, we will take advantage of existing venues where teens with eczema congregate to facilitate an in-person workshop to develop the videos with the videographer. Otherwise the video development will occur virtually.

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

Below is a list of the steps we will take and the proposed timeline for execution: May 2020 • Form the teen/parent/adolescent committee • Team building • Hire the videographer • First meeting: Develop the communication plan / key messages June/July 2020 • Storyboarding • First iteration of video shorts • Conduct focus groups with peers to gain feedback. Enlist these peers in promoting the videos. August/September 2020 • Refine and edit video shorts • Produce the final videos with editing assistance from video consultant September/October 2020 - • Strategically roll out campaign for maximum impact (consider Eczema Awareness Month, World Atopic Eczema Day, and other local events such as the start of the school year) using targeted advertising / promotion. • Work with teen leaders and teen/adolescent advisory team to their networks. Cross promote each others’ postings.

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

Because we propose to use social media platforms to promote our campaign, our idea is highly scalable and adaptable to a range of English-speaking audiences around the globe. Using peer to peer promotion as well as paid promotion, we will ensure that our messages reach a wide range of audiences while also targeted specific audiences in each locale. Further, by leveraging the social networks for teens, we ensure that our campaign will reach the intended audience -- adolescents and teens -- with messages that are likely to have an impact because they originate from their own social network.

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

We will measure reach, engagement and impact using the following metrics: • Number of views • Number of reactions (“Likes” etc) • Engagement (“shares”, "retweets" and comments) • New groups and clusters forming as a result of the campaign • Feedback from focus group participants (results) One potential barrier is the challenge of developing materials that resonate with teens in a variety of countries as language and humor may not translate across geographies. However, our project can be promoted locally as well as internationally and we anticipate that viewers will decide which ones resonate or not. In some sense, it’s an experiment to see which ideas and videos gain traction and attract attention from our intended audience.

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)

Budget: Videographer/Production/Editing: $6000 Advertising/Marketing: $3000 Project Management: $4000 Teen and parent stipends (14 @ $100): $1400 Video conferencing / Video sharing Technology: $600 Total Budget: $15,000 Total Request: $10,000

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Photo of Amanda Panda
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This is my favorite idea!!

One of the humans basic emotion is love/acceptance. As we can see, socializing whether it be peer to peer, support groups, or most popular these days, social media...everyone stays connected! Regardless of demographics, socio economics, or just physical distance, no one is too far to reach out and make a friend!

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