Benefits: "I Refuse EB" Fund for Epidermolysis Bullosa Research
I Refuse EB Fund for Epidermolysis Bullosa Research
Goal $ 50,000.00
46.02% towards our goal
DONOR LIST
Mark Kearney
$ 50.00
The Kearney Family
Anonymous
$ 10.00
Anonymous
$ 10.00
Anonymous
$ 25.00
Anonymous
$ 100.00
Kourtney
$ 10.00
I hope every bit helps.
Anonymous
$ 50.00
Anonymous
$ 25.00
Anonymous
$ 100.00
Fett-Davis Family
$ 50.00
Jessica Snedeker Peterson
$ 40.00
In memory of Livvy. Fly high, butterfly.
Anonymous
$ 50.00
Anonymous
$ 50.00
Dianna Badalament
$ 25.00
Fighting for Eli M. ❤
Anonymous
$ 25.00
Nathan Waddell
$ 30.00
The Burwinkel's
$ 50.00
In honor of Nate. Nate's Ninjas!
Sandy & Kelly Blair
$ 25.00
We are praying for you all.p
The Kramer Family
$ 620.00
Grace Kramer raised a total of $840 for her 4th birthday instead of asking for presents--she did this in memory of Nathan Bernecker, who sadly lost his battle to EB in September 2016. #irefuseEB
Poolesville Elementary School
$ 4,075.87
This donation was generated by the students of Poolesville Elementary School, in Poolesville Maryland.
#wefightEB
$ 100.00
This is in honor of Nate Bernecker and his beautiful family. We will fight EB with you all!!
Sherry
$ 25.00
For Melina Spinazola
The Waddells
$ 30.00
The Burwinkels
$ 50.00
In honor and memory of Nate. Nates Ninjas!
Anonymous
$ 20.00
Dee Chettle
$ 10.00
Just watched a Ch5 program in the UK about John and Charlie. Amazing kids to go though so much pain and still smile is amazing. . I hope Dr Tolar and team are close to a cure. <3
Dottie
$ 50.00
Thank you for all you do to make the lives of these children better.
Anonymous
$ 10.00
The Collins Family
$ 150.00
The Rogers Family
$ 50.00
Anonymous
$ 25.00
Tom And Karen Kelly
$ 50.00
In memory of Marjorie Borgardt
Oconnell Family
$ 50.00
I’m honor of Charlie and Mieli and in memoryof Marjorie Borgardt.
Anonymous
$ 50.00
Anonymous
$ 282.48
Steven And Diane Chandler
$ 100.00
In honor of Greyson Monoceros
Anonymous
$ 25.00
[Stop]
$ 23,009.68 raised
Give Now Join This Team!

Epidermolysis Bullosa, EB, is a rare connective tissue disorder that affects 1 in 50,000 live births. There are children and adults who face the challenges of EB every day.  The slightest amount of friction, even the softest of touches can cause severe and excruciatingly painful blisters. There is no cure. Many children do not make it to their first birthday and those who survive, spend their days bandaged from head to toe, full of constant pain and suffering the many complications that come with EB.

I Refuse EB was launched in 2012 by EB advocate Christie Zink to help raise awareness for EB, promote advocacy and support the research efforts taking place at the University of Minnesota by Dr. Jakub Tolar through the University of Minnesota  Foundation (UMF).

Today, there is NO treatment or cure. But there is very real hope in promising research and clinical trials being conducted at esteemed institutions such as the University of Minnesota team led by Dr. Jakub Tolar. His tremendous progress in pioneering safer BMTs has been life altering for children, and has potentially broader implications for others suffering genetic disorders or diseases like Leukemia.

This research is vital and it has been a privilege to have the opportunity to support Dr. Tolar and his team.

Team Leader: Christie Zink

"I Refuse EB" Fund for Epidermolysis Bullosa Research Raised
Christie Zink $ 2,100.00
Christina Grierson $ 8,480.00
Katie Majeres $ 1,615.00
Lindsay Monnier $ 1,466.33

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