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- Опубліковано 7 вер 2024
- "Just by saying hi to a kid like Eli, you can learn so much. The mission is to spread awareness, fund research, and cure EB." Jill Vedder, Co-Founder of EBRP, talks about how we can all #ComeSayHi to #HealEB.
Thank you to our friends at Door Knocker Media for making this project possible.
About EB Research Partnership
ebresearch.org
Founded in 2010 by a group of dedicated parents and Jill and Eddie Vedder of Pearl Jam, EB Research Partnership is the largest 501c3 nonprofit funding research to find a cure for Epidermolysis Bullosa (EB). EB is a group of devastating and life-threatening genetic skin disorders that affect children from birth.
Awwwwwwwwwwww Eli is so wonderful I love how he explained this rare illness . Very profound and i hope and pray they come up with a cure .
Wise beyond his years. ❤
You are a very special young man Eli! Boys and girls around the world can learn to be caring and understanding of EB.Stay safe and beautiful inside and out!
This certainly touched my heart! What a precious child. ❤️ He is wise beyond his years. I am so glad they're bringing awareness to this. I pray that they may find a cure soon!
God Bless him & thank u to the Vedders
It’s heartbreaking how much thise kids suffer, and heartwarming that you guys help ❤❤❤❤❤❤❤❤
This is a great charity that helps with rare disorders.
Years ago I learned about Jonny Kennedy who dealt with EB. My heart bleeds for anyone dealing with this. Thank God for people who have the resources, to use them for pure good. I'm so often discouraged with the unfair and unbalanced hands people are dealt but then moments of beauty push me back towards hope. Thank you for doing this.
Beautifully expressed, thankyou🌈
My God Jehovah exodus 6:3 heal them through your son Jesus
So beautiful
He doesn’t though.
@@adoralysfadoralysf4179 no not now
Soon though
What an inspirational kid.
Prayers sent for you Eli....I ❤ your sweet cute little voice😁
I hope you are amazing Eli you're strong and you'll teach others to be open and strong ! Theres nothing wrong with anyone who's different it's people who look for differences in themselves and others because they are too rooted in the physical center but you're special because you understand that already and that is priceless ! Love and joy my aunt told me about you and how wonderful you are BTW we love the pearl jam family,will be supporting this cause soon ! Smile
Omg! Thank you for this 💗🙏🏻🙏🏻
Só gratidão a Deus e as pessoas que tem um coração enorme no peito,como vc e seu marido . Gratidão sempre.
Hi Eli. You are so strong and your story is very inspiring.
Hi Eli you are a superhero to me too. I love you.
We win!
Stay strong Eli, just saying hi 😁 by the way I have EB too.
Hi Jill, I hope you get this message. I'm feeling a Ted Talk would help bring some much-needed awareness to this disease.. I live in Canada. It concerns me that, that though I am familiar with this diseases, many are not. There is so much damage being done to kids in school that leads to cruelty, we need to aspire our children and adults to starting opening their eyes and change how we see people, open our heart. I am happy to go into schools in Ontario and discuss this disease. We are people of privilege, some reality would help. Deep Respect Kelli EB Reach Partnership. If anyone at all reads your messages, please send this message to Jill. You can only try
Hi, Eli! ☮️❤️
❤amazing kid with the sweetest voice
Wow, ZERO dislikes.😍
Hi Eli, stay strong!
The 9 people who disliked this have no heart ❤.
To be honest with you there might be a reason they did that because of all the things I looked at about this disease this is actually the only one that doesn't really tell you about the disease .
On my cell phone I can see that yes there's some kind of cuts or lesions on his skin but they don't really give you information about the illness and elsewhere I learned more .
I mean yes this does bring an awareness to the child suffering but not much info on the disease itself .
@@gardensofthegods Personally, I think the cause is great and commend anyone for supporting this cause. However, I am more interested in other causes of my own through my own charity. I have sympathy for a child afflicted with this illness, but personally, I did not care for the interview.
I just learned about this. Where are we at today with this?
Wow 😭😭😭