Hope for a CURE: an untraditional request

December 15, 2016

There is no cure for EB...YET. High tech bandaging and even bone marrow transplants can only treat the symptoms and delay progression of the disorder. While we are so incredibly grateful to have these things and the hope they currently provide for individuals with EB, our ultimate hope will always be for a cure.

 

An extremely important publication was recently released on the work that is being done to correct the genes of individuals with EB. To sum it up in an overly simplistic and non-scientific way: the genes of individuals with EB are missing the "glue" that holds our layers of skin together. Gene editing would be able to "teach" those genes to generate that "glue". After genes have been edited and corrected to properly produce this "glue", their skin would be no different than an individual unaffected by EB. If you're interested in the unsimplified and highly scientific details, I encourage you to read them here or click the image below. 

 

 

No single organization, including EB Promise, can do it all. I have been asked countless times what we, as an organization, are doing to help find a cure and do other types of preventative work. I would love for EB Promise to play more of a role in the preventative aspect and ultimately be a part of funding research for a cure, and I hope that one day we are a large enough organization that we are able to dedicate ourselves to that as well. Currently, however, EB Promise is filling an unmet need: caring for and advocating for orphans living with EB. We are doing work that no other organization has been able to effectively do before. We are new, small, and focused in our mission, and we are doing important work. We have a great deal of hope in a cure AND we want to make sure that these children are here to see it and benefit from it. The support, advocacy, and education that EB Promise provides can be the difference between life and death for the children we serve. But it's true - the work we do is reactive, not preventative, and these children and the EB community in general need BOTH.

 

While there are a number of organizations and researchers doing great work to find treatments and a cure for EB, we at EB Promise whole-heartedly support (and encourage YOU to support) the work of Dr. Jakob Tolar out of the University of Minnesota. Dr. Tolar is pioneering the research on gene editing in order to find a cure for EB. He has a genuine and sincere heart for the EB community and wants nothing more than to find a cure. 

 

 

This is Dr. Tolar with Anton. Anton was abandoned at birth and was adopted from Russia by a wonderful family in Texas. He had a bone marrow transplant under the care and supervision of Dr. Tolar, which was highly successful. Unfortunately, Anton had some unexpected complications and passed away exactly one year ago today. If you asked Anton what he wanted to be when he grew up, he would have told you that he wanted to be like Dr. Tolar and find a cure for EB. 

 

A cure didn't come in time for Anton or countless other individuals with EB. But it's within our grasp and the ONLY thing keeping it from becoming a reality is funding. We support and endorse Dr. Tolar's research, which is why we are doing something most will consider fiscally irresponsible...

 

If you were considering or planning to make a donation to EB Promise during the month of December, we ask that you instead make that donation to Dr. Tolar's research. 

 

Does this mean that EB Promise does not need your financial contributions? Absolutely not. We are a new organization and - quite honestly - are in desperate need of your donations. But as the founder and executive director of this new organization I want to our values clear: we value and support Dr. Tolar's research to find a cure for EB. My ultimate dream is that EB Promise will no longer exist one day because there will be no need, as there will be no such thing as EB. In the meantime, we will keep doing everything that we can do advocate for and support orphans with EB but we never want to lose sight of the ultimate goal: a cure. 

 

Here is the link to donate. Today, the one year anniversary of Anton's death, would be an extra special day to make that donation in honor of this very special little boy. 

 

 

 

 

 

 

 

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