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Skin stories, ADExpo and Mobile App - For tools and support to tackle bullying.

Connecting patients, highlighting the challenges, triumphs, and wisdom of people living full lives while managing chronic skin conditions.

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

A 3-DIMENSIONAL APPROACH. Skin stories: Our skin functions as an introduction: it’s where the self meets the world, and it projects out our identity for others to see. If we are to complicate the prevailing narrative about skin-to reveal it as another sort of cultural mythology that holds up a particular ideal—then we need to see and hear from people whose skin deviates from that prescribed norm. We need to know (and even deeply internalize) that the characteristics of a person’s skin are not a referendum on their worth or character, and that they’re not a barrier to a happy and fulfilling life. Expo: What do you get when you bring adults and children with AD, their loved ones, renowned eczema researchers and medical providers, and the companies that make eczema treatments and products all under one roof? it is more like an eczperience that results in dozens of new friendships and a renewed sense of hope. Expo will have educational seminars hosted by industry-leading medical professionals to walk patients through the latest AD therapies and provide informative breakout sessions covering topics from skincare to sleep deprivation with compassionate support groups for patients and their loved ones. We can also incorporate early-morning yoga, meditation and aquatic fitness classes; mid-day acupuncture sessions, miniaturization stations and eczema-friendly product sample buffet. App: Enabling patients and the community to connect and network for awareness creation and support.

What is the name of your organization?

Youth Contact Association

Where are you and your organization based?

Kampala-Uganda

Please provide a description of your organization.

Youth Contact Association is a youth advocacy platform for socioeconomic growth and transformation of our communities through sensitization and awareness creation. By working with people of all skin color, and backgrounds, we build a common platform through which individuals share life experiences aimed at strengthening others to live a more appreciated and impactful lives.

What is your name?

Joseph Mulabbi

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

As an NGO,we've witnessed how eczema victims are disregard in communities. AD challenge is an opportunity to sensitize communities and empower AD victims to embrace their skins as a gift. We believe that the dominant cultural narrative around skin needs to be changed, because all skin is good skin.

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).

There aren’t many places whether on the Internet or community gatherings or get-together environments where you can hear directly from people managing chronic skin conditions while living full lives. Our idea aims to change that by delivering those stories, along with tips, tricks, recommendations, and curated content, straight to users' phones and those who care for them. We believe that the dominant cultural narrative around skin needs to be changed, communities need to embrace and respect those with different skin colors and know that all skin is good skin. We seek to combine skin stories, AD Expo and a mobile App as means connecting patients, highlighting the challenges, triumphs, and wisdom of people living full lives while managing chronic skin conditions. This will provide the tools and support for AD patients to tackle bullying.Our major objective is to create a family network of skin warriors and make them realize that home isn’t necessarily a place you live but the feeling you get when you meet and connect with people who share a similar experience. We want all the people living with AD – along with their friends and family – to know that there is a light at the end of the tunnel. You just have to run towards it. We're continuously engaging heath experts and AD victims to ensure that our model is user-centric. Our skin functions as an introduction: it’s where the self meets the world, and it projects out our identity for others to see. If we are to complicate the prevailing narrative about skin—to reveal it as another sort of cultural mythology that holds up a particular (young, white, texture-less) ideal—then we need to see and hear from people whose skin deviates from that prescribed norm. We need to know (and even deeply internalize) that the characteristics of a person’s skin are not a referendum on their worth or character, and that they’re not a barrier to a happy and fulfilling life. Picture a magical place where no one looks at you funny because you have eczema. Where you can strip down to your swimsuit at the pool without having to explain your flares. Where having AD means you’re just like everyone else. Imagine an enchanted universe where the menu is free of the top 8 allergens, the fitness classes are low-sweat, the massage menu is flare-friendly and judgement-free, and cutting edge eczema education is delivered by world-class experts. This wondrous world exists, and it’s called ADExpo a gathering for the eczema community, uniting patients of all ages, caregivers, and medical and industry professionals. Expo focuses on empowering people with eczema to live their best life, with an emphasis on holistic health and wellness.

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

We shall develop a mobile app, website plus social media platforms for easy access of our services by the target audiences but also for making and awareness creation purposes. The platforms will be managed by our technical team to make sure they exist to serve their purposes. The development shall be done with partnership and collaborations with the Ministry of Health, ICT firms, AD specialists, etc. These platforms shall remain open and free to our audiences to access all relevant information in regards to our services. After the App is fully fully developed, it shall be hosted on both Google and Apple stores. To produce short videos that are really compelling, we shall set a good quiet environment with our story subjects in front of a camera to tell the story. Our production team will edit the stories and come up with a short, direct and compelling stories that can be shared with our audiences throughout all our media platforms. Again, we shall also allow users in different locations to share with us their stories, those stories will be sorted and edited by our technical people before we can directly upload them on our platform. We might as well need good script writers and videography professionals with good equipment to be able to capture stories of those we shall be able to reach. After launching the pilot stage for the app for some months, and gathering important feedback from users and keep making necessary adjustments to make sure the app meets the users' demands. We hope to launch our ADExpo the first of its kind in 2021 after thorough preparations, consultations, and partnerships. 2020 PROJECT TIMELINE 1.Engage the Ministry of health and AD specialists for collaborations, consultations and mapping of beneficiaries communities based on the available data from the ministry's database. 2.Platform development (Mobile App+Website+Social media platforms) and deployment on both Google and Apple Stores. 3.Project launch and piloting 3.Deploy comprehensive sensitization, awareness, and marketing campaigns. 4.Evaluate the pilot, iterate and prepare for ADExpo2021

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

There aren’t many platforms where you can hear directly from people managing chronic skin conditions while living full lives. Ours being a digital platform will be designed for scale enabling users to connect and share from anywhere at any time. The Expoz will be rotational from country level to regional. Thus, both App and ADExpoz are scalable. We want all the people living with eczema/AD – along with their friends and family – to know that there is a light at the end of the tunnel. You just have to run towards it. Life with the disease can seem daunting not knowing how tomorrow will treat you. As any sickness goes, it usually doesn’t treat you well. It leaves much to be desired, much to be wished for. It’s okay to feel this way. How can you not think of greener pastures? The hurt can feel endless, and a happier tomorrow sometimes seems so out of reach. Having said that, remember one thing. Not only is a better tomorrow in reach, but it’s coming. Nothing lasts forever, and that includes your pain. There will come a day where things turn around, where light at the end of the tunnel will be visible. Once you see that light, run towards it. Run towards it with full force. It will only come as fast as you run. We don’t mean run in the literal sense of course, but “run” by the way you live your life with eczema. Run with the strength to push through the pain. Run with the courage to never stop running. If the light at the end of the tunnel fades, don’t worry. Most of the time it will take more than a couple of tries. But never, ever stop running. That is a snapshot of how we intend to impact and influence behavior and understanding of what and how it feels like living with eczema and how communities can play a vital role in supporting AD patients to live thriving lives

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

As a digital platform, the number of people downloading and interactively engaging our mobile app, social media and website, and those who will attend our Expos, plus the stories of triumph and experiences of change shared by those whose lives will have been empowered and transformed as a result of our programs shall be good success indicators. Also, the ability to scale the project and its activities to new areas/countries and the partnership agreements signed shall all mean success to us. What do you get when you bring adults and children with AD, their loved ones, world-renowned eczema researchers and medical providers, and the companies that make eczema treatments and products all under one roof? -When you grow up attending Expo Camp and can’t wait to return as a counselor … -When you used to be embarrassed to wear shorts in public until you saw the other kids at Expo Camp wearing shorts and realized, “Who cares what people think?” … -When your squad creates a secret handshake and cheer that only Expo Campers know about … -When you were too shy to attend school dances until Expo Camp made you feel brave enough to bust out your best moves on the AD-travaganza dancefloor … -When your mom asks why you want to wear your eczema swag to school, and all you can say is, “You wouldn’t understand – it’s a camp thing”, that’s when you know ADExpo is the place to be for kids and teens with AD and thus what would help us know we have and still addressing an unment need.

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)

The grant would enable us to cater for the following items on our budget. BUDGET: 1. App design and development = $4000 2. App hosting on both Google and Aple stores = 150/year. 3. Website design and hosting = $2500 4. Project launch = $2500 5. Marketing campaigns + Pilot phase = $3500 6. Documents and Logistics $2000 Estimated Total Budget cost = $14,650

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

N/A

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Spam
Photo of Susan Jackewicz
Team

Hi Joseph Mulabbi 
Thank you for your reply! You’re very much focused on strengthening the family network in your community to help drive change around the way AD is perceived. I’m wondering about your idea of recording and making stories available through an app to help get the message across.

Your proposal thoroughly details the technical aspects of generating the videos. I’m wondering though, what if you delved deeper with your families and kids into the “how” of storytelling, to help them give stronger voices to the videos relaying what they’ve experienced? You might want to look at an organization that participated in one of the past OpenIDEO Challenges...The International Storytelling Center https://www.storytellingcenter.net/initiatives/stories-for-change/. Their focus was something different than health...on global peace, using the power of narrative to tell stories for impact. I mention them here because they’ve developed techniques for teaching young people how to better tell their stories. Your children with AD...and their parents....have powerful stories to tell....what if you helped them learn a better way to do that? Might that make your videos even more convincing on social media and within the app?

Spam
Photo of Joseph Mulabbi
Team

Hi
Susan Jackewicz 
Thanks for the insights shared,
We are looking into them and we shall definitely incorporate your advise.

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