Dedicated to raising awareness, being a voice & supporting research efforts taking place at the University of Minnesota by Dr. Jakub Tolar.
Joined October 2012
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You can support Ethan in his efforts to help the doctors find a cure for EB at... fb.me/6lbjeBjpp
I Refuse EB founder Christie Zink made a commitment to be a voice for Tripp and all of those affected by Epidermolysis Bullosa. In a few short weeks she will be running the #nychalfmarathon to raise money for EB... facebook.com/irefuseeb/posts…
EB advocate and founder of irefuseEB.org will be running again for EB research. This time in the #nychalfmarathon in honor of John Hudson Dilgen - EB
Please consider supporting our friends at... facebook.com/story.php?story…
Thank you John for always inspiring us, you truly are a super hero... facebook.com/irefuseeb/posts…
Epidermolysis Bullosa Awareness week may be over, however the need for awareness does not end. The need for funding, the need for research continues.
This holiday season, with each $25 donation, you can... fundly.com/irefuseeb-org-res…
This is why we are so passionate about supporting this research and raising the funds for this vital research. epidermolysisbullosanews.com…
You can be a part of the cure and support #teamtolar when you purchase one of these limited edition shirts.
All net proceeds will be donated directly to Epidermolysis Bullosa research at the University of... customink.com/fundraising/te…
irefuseEB.org founder Christie Zink, along several Epidermolysis Bullosa mommas will be lacing up for the 37th annual Medtronic Twin Cities Marathon to raise money for Epidermolysis Bullosa... facebook.com/story.php?story…
We love this artwork done in memory of Jonathan Pitre by the folks at Mountain Orchards!
#cureEB facebook.com/story.php?story…
We think Robb Freed is pretty awesome! Take a moment to check out and follow his journey The Big Ride for EB kbzk.com/story/38791832/bicy…
This is most certainly worth the 5 minutes. What an amazing young lady! She may have been Born Different, but she is certainly proving that it does not define her at all! facebook.com/story.php?story…
If you did not have a chance to watch Dr. Tolar live, here is the video of the talk he gave this morning regarding the important research being done at the University of Minnesota Masonic Children's Hospital. facebook.com/story.php?story…
Another example showing how broken our healthcare system is and how families affected by things like EB have to fight for coverage and still not get it. Something needs to change.... facebook.com/story.php?story…
We certainly agree that Dr. Tolar is the right fit for this position. ow.ly/o32C30kUzKx
We need to find a cure for EB! Join #teamtolar and #run4EB. Help us raise money for EB research and help Makenzie and all of those affected by EB facebook.com/story.php?story…
We should all do what we can to #fightEB youtu.be/69dvoCTIfSk
This is Archer’s story. His dad’s post is pretty powerful, and humbling.
#cureEB facebook.com/story.php?story…
Some of you may remember our friend Melina, who has along with her family been a champion for the important work being done at the University of Minnesota Masonic Children's Hospital and the... facebook.com/story.php?story…
We encourage you to take a moment to read this post. If you are affected by EB, or someone you love is affected, let your voice be heard... facebook.com/irefuseeb/posts…
Our friend Eli has been featured in People! It is always wonderful to see something like EB in the national media because it creates more opportunities for awareness and education.
Eli is currently in... people.com/health/eli-lindsa…