EB Awarness

The worst most painful disease you never heard of Epidermallysis bullsa. My baby brother fights everyday.

Photo of Jamie Valenzuela
4 1

Written by

Website or social media url(s) (optional):

Daxten eb strong His fb group

Date Started

Jan 6 2017

Project Stage: Select the description below that best applies to your approach.

  • Growth (have moved past the very first activities; working towards the next level of expansion)

1. Personal Journey: What’s the story behind why you decided to start this project? NOTE: All applications must include a 1 minute video that answers: “I am stepping up to make change because..."

My dad had stage 4 brain cancer and my baby brother was born with eb. I have 7 siblings and my mom works so hard to do everything. I want to bring awareness to both but EB is so rare that nobody almost knows about it. Their sling falls off so easy. They are called butterfly Kids and there is no cure. Slot die from it. We need a cure!

2. The Problem: What problem are you helping to solve?

Just letting everyone know this is out there and babies , kids and some adults suffer. We need more eb clinics.

3. Your Solution: How are you planning to solve this problem? Share your specific approach.

Share with the world. Make people aware!

4. Example: Please walk us through a specific example of what happens when a person or group gets involved with your project.

Maybe it’s a step closer to a cure

5. The X Factor: What is different about your project compared to other programs or solutions already out there?

Nobody knows of eb hardly.

6. Impact: How has your project made a difference so far?

Iv made some people aware

7. What’s Next: What are your ideas for taking your project to the next level?

Fundraisers, activities anything. Fband internet but my phone is broke right now and my computer broke a year ago

8. Future Support: What are the resources needed to make your vision a reality?

Laptop and phone but mom said she will get it but just anything to help make people know this is out there. I need people sharing!

9. Finances: If applicable, have you mobilized any of the following resources so far?

  • Friend support
  • Family support
  • Donations less than $100

10. Ripple Effect: Please share some ideas of how you could partner with other changemakers or involve other young people as leaders in making a difference.

Maybe also helping spread the word with other medical foundations

How did you hear about this challenge?

  • Social media


Join the conversation:

Photo of Naomie Pierre-Louis

Hi Jamie Valenzuela , it’s inspiring to see you stepping up for your loved ones. What is eb? Can you let us know what the symptoms are so we can be aware of the warning signs. Also since it is so uncommon is it often mistaken for something else?

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