I Refuse EB

I Refuse EB Dedicated to raising awareness and supporting research for Epidermolysis Bullosa Visit www.irefuseEB.org for more information and to get involved.

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. irefuseEB.org 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. 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. To date the irefuseEB.org has successfully raised and donated $30,000 to the University of Minnesota in support of a cure to end EB.

This year has been incredibly challenging for so many. People are struggling to adapt to this new normal while at the ...
12/07/2020

This year has been incredibly challenging for so many. People are struggling to adapt to this new normal while at the same time desperately trying to hang on to any piece of the way things once were. We are there too.

The annual ornament has been a project so very special to us. We have encountered multiple obstacles in our attempt to get them done, primarily with the logistics of shipping (getting them to us and getting them to you). So, in order to keep this tradition going, we had to do things a little bit differently this year.

Rather than doing our typical fundraiser, we have decided that we will provide the high resolution image file free of charge to anyone who would like it and it can be used to order an ornament from any of the printing sites (like Shutterfly). Think of it as our gift you in this crazy year. Of course if you would like to donate, you can do so directly to our fund at the U of M via the link below.

If you would like the image file, please message us via Facebook with your email address and we will send it to you.

Thank you for your patience and your understanding. This has been one tough year. We hope that you are all able to stay healthy and safe and that maybe we will see a light at the end of this tunnel soon.

Rare disease day is tomorrow...Help support research to cure EB.
02/28/2020

Rare disease day is tomorrow...
Help support research to cure EB.

Learn more about EB research at the University of Minnesota.

We really want to put this in perspective for you...There is a mom who has a son with moderate/severe RDEB (Recessive Dy...
01/12/2020

We really want to put this in perspective for you...

There is a mom who has a son with moderate/severe RDEB (Recessive Dystrophic Epidermolysis Bullosa) and she shared her most recent EOB that were charges for THREE weeks...THREE weeks of supplies. Guys...I cannot even wrap my head around it...
OVER $42,000!!!! That is about $14,000 a week, or $728,000 a year. It is mind blowing.
Fortunately she has coverage for a bulk of this. What on earth do you do if you don’t?

I mean, $42,000 is equivalent to an annual salary for many people. It just does not make any sense. So difficult decisions often have to be made about care and lifestyle. Pay the electric bill or get the vital products needed for your child or yourself.

A major change needs to happen, but in the mean time all we can do is help where we can.

Here is the link again. Feel free to send me a private message for more information or questions.

Families, feel free to post your experience...I would love to share as much as I can to help people really understand.

I THANK YOU AND THOSE YOU HELP THANK YOU!

https://www.gofundme.com/f/bandages-for-butterflies?utm_source=customer&utm_medium=copy_link-tip&utm_campaign=p_cp+share-sheet

Please help if you can. So many families struggle everyday to get the supplies they need covered.
01/12/2020

Please help if you can. So many families struggle everyday to get the supplies they need covered.

Christie Zink Bandages for Butterflies Most people who know me, know that my passion lies in helping people, and I am deeply committed to trying to make thin

01/11/2020

Please consider helping raise funding to help families struggling to pay for wound care supplies not covered by insurance.

I wish I could find the words to express how important these supplies are and how families often struggle because of their cost.

One family sent me a copy of a bill that exceeded $17,000 for month. Fortunately their insurance covers it. Imagine if it didn’t. Can you even fathom the financial burden?

https://www.gofundme.com/f/bandages-for-butterflies?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-3

Getting these all packed up and ready to ship on Monday! Thank you to everyone who supported this special project again...
12/14/2019

Getting these all packed up and ready to ship on Monday! Thank you to everyone who supported this special project again this year. With online and offline donations, we will be able to donate about $3000 to Epidermolysis Bullosa research.

11/26/2019

Happy what better way to celebrate than to make a donation to a Great cause! Today only your donation will be matched TWICE!!

What are you waiting for...
www.fundly.com/holiday-hope-2019

Thank you'll for being so patient while we figured out what was causing problems with donations. We have corrected the ...
11/15/2019

Thank you'll for being so patient while we figured out what was causing problems with donations. We have corrected the issue and tested the site and it is now working.

irefuseEB.org is dedicated to raising awareness and research funding for Epidermolysis Bullosa (EB). To find out more about about EB visit irefuseEB.org

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Melrose, MN

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