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Walk a mile in my shoes!

This would bring the understanding and realisation of what it means to be an AD patient, and consequently the minimization of bullying.

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

Our program will encourage people to participate, beacuse there will be an award for those who will last the longest without scratching and with completing everyday tasks (cooking, cleaning, sport, school/job tasks,...). We will put people in the shoes of an AD patient by dressing them up in clothes that will make them uncomfortable and itchy. With this kind of program, we will turn attention to this problem and with the "strangeness"of the approach, people will get interested. We will also rely on the ego of the bullies to accept the challenge, which of course through their eyes, is not that big of a deal. We think it is important that people experience the challenges AD patients face everyday, on their own skin. That will give them the understanding and the actual view of the situation. We hope it will minimize the stigma, the bullying, the asumptions, the overlooking all AD really is.

What is the name of your organization?

Društvo atopijski dermatitis (Atopic dermatitis association)

Where are you and your organization based?

Medvode, Slovenia

Please provide a description of your organization.

We were founded in March 2017. We have done two Atopic expos bringing togheter companies, doctors and patients. On monthly bases we provide support gropus, workshops and lectures by doctors. We also have a dermatologist and allergist as consultants for patients. Our mission is to provide the support (by quality information, emotional, financial,...) to AD patients and their close ones. Also we wanna raise awearnes, improve doctor-patient comunication, and help them with other everyday challenges

What is your name?

Špela Novak

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

We founded the non profit organization in our country to help patients and their close ones with everything they could possibly need. From support, information, connection, to finance and other aspects. Bullying, missunderstanding, discrimination are one of the biggest problems, besides itch, people with AD face. It impacts almost every aspect of their life, from kindergarden, school, and work, to communication with doctors, friends and even family. So this is why, we feel the need to participate in this Challenge, beacuse it would make a huge difference in AD patients lives.

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).

Main objectives of our idea are raising awearness, giving people a chance to really understand what it means living with AD, getting the bullies to participate and change their perspective, making a stand, that it is NOT jst a skin condition and showing support, that someone cares and that they (AD patients) are not alone. We belive it will help AD patients and the whole community in many ways. The unusual concept of it all will atract attention, which will lead to raising awearnes, to participation, to spreading the word and the experience. And all of that combined will make an impact, and change the minds of those, that will be a part of it. We gathered some feedback and the biggest challenge of our idea is actually making the suit that will mimick the real feeling of itching and "uncomfortable" skin. But we have spoken to a lot of adult AD patients and came up with reachable and afordable solution.

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

To make this project happen, we will need the suits, a suitable place, awards for participants and good marketing. We would also contact doctors, schools and other organizations, workplaces. The idea is to implement this experiece as an educational tool for schools for example. So we would connect with sociology and psychology teachers and classes and similar programs, and would arrange this as something they could make a part of their education. Besides that we would also make a campaing on internet, throughut the media, medical institutions, members of our organization, their closeones,... Our main focus with our message to people would be educational but mostly it would be presented as a competition type of thing, so that we would activate the bullies to participate. So we would challenge those, who dare! So we would need aproxximatley up to three months to make contact with all of them (schools, organizations,...), to prepare for a campaing, to make arrangements for a place and exact time of the event, which would have to take place for at least a week or maybe more. To activate organizations which would participate with awards. to make the suits, to prepare educational materials for people who never heard of AD with some facts about AD and about underestimating it, also about bullying. Also some appealing invitations about the competiton, the awards and the challenges they will have to face. And questionares for the participants. So this would be the preparations, before the launch of the campaign. Then we would start the advertising, which would also take another two to three months, and then the event would happen. It would probably have to last for at least a few days, so that everyone who would want, would participate. Also we would have to types of measurments of who wins. Time spent in a suit and time spent without scratching. So we would need some judges for that.

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

We belive that the most efficient way you can understand something is to experience it. And this idea is the closest you can get without actually having AD. We believe most of all it will be something people will talk about. It will put another perspective on AD, it will be noticed and therefore talked about and it will raise interest and with that also more understanding. It would really be an important step to making a change and to creating a community with less stigma and discrimination. We belive it can be cariied out to larger patient networks around the world. The only real adaptation is the making of the suits, so the bigger the event, the more suits you have to make. Everything else is fairly simple to duplicate.

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

For all the participants we would make a before and after questionare. We would do the same before the campaing and after in as many random people as possible (through doctors, schools, workplaces, organizations, medical facilites, social media), to see the impact. We would also find some voulnteers (AD patients), that would describe their experience in school for example or in their workplace before, and then, we would try to include that class or other employees in this challenge and they would tell us if anything changed. The biggest barrier will be to make bullyies to participate. We will work with psychologists to understand thembetter and to make the campaign so that it will "speak" to them and that they will respond. We will measure success by seeing the difference in the results and the stories of the people, that will participate in the challenge and their closeones. Once it would be completed and based on the response, it would be fairly simple to execute it regularly. The most important things are the suits, everything else can be personalized for different spaces, conditions and population. The biggest investment are the suits and the advertising.

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)

Suits 3500$ Psyhologist and dermatologyst for the content of materials and campaign - 800$ Suitable place (rent and preparation) for one week 4500$ Leaflets, other paper materials 500$ Advertising, marketing, media, social media, radio and TV - 5000$

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

3 months preparation 3 months campaign throughout schools, media, organizations, medical facilites,... 1 week execution For much less financial input and time it could be repeated anytime and almost anywhere. It can bo moved and arranged practically anywhere. So if this funds would be approved, we could actually use this materials to repeat this idea over and over again fairly simple and as often as needed.

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Spam
Photo of Innocent Temba
Team

Hi spela,
You say that you will put people in the shoes of an AD patient by dressing them up in clothes that will make them uncomfortable and itchy.How you will convincing peoples to participate in your idea? How you will scale this idea to larger patient network around the world?

Spam
Photo of Susan Jackewicz
Team

Hi Spela Increasing understanding of “what it’s like” is a big challenge for AD! I had a friend who had intense flare-ups when she was age 20’s. You could tell she was in pain, and while she tried to physically hide the itchy skin, the look on her face and distracted conversations told us she was more occupied just getting through her day than being “social”. Recreating that feeling with “itchy skin clothing” is a good start! Do you have any photos you could share that might illustrate the kind of clothing you’re thinking about? This kind of “empathy suit” was developed by the MIT AgeLab to help younger people begin to understand what it’s like for many people to become old. Here’s a video link, maybe it will be inspiring for you. http://agelab.mit.edu/agnes-age-gain-now-empathy-system. I’ll look forward to how your idea develops! Susan