Epidermolysis Bullosa, EB, is a devastating 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 of these children do not make it to their first birthday and if they do survive, their days are spent bandaged from head to toe, full of constant pain and suffering the many complications that come with EB.
We are dedicated to raising awareness, being a voice for those affected, promoting advocacy and supporting the research efforts taking place at the University of Minnesota by Dr. Jakub Tolar through Pioneering Unique Cures for Kids. This research is so incredibly critical and it has been a privilege to have the opportunity to support Dr. Tolar and his team. Dr. Tolar is continuously striving to make life better for these kids despite the challenges and setbacks. Because of this dedication, tremendous strides are being made and each new day brings them closer to finding a cure.
does anyone know if the fleece jackets have the names on the backside like the shirts?
No they do not, there are far too many names to be able to do that.
No, the Onesie shirts and the fleece do not have the names on the back as they would be too small to read.
I would like to order four large shirts, how do I get the order and money to you.
Hi there! If you click on the link to the I Refuse Store, you will find everything there! Thank you for your support!
Where is the I refuse store icon? I’m not finding it and would like to order a hoodie sweatshirt
As soon as the New T-Shirts are ready i would like to buy a few.
Please keep us updated in it..
I ordered a car decal and I received an envelope today with a card in it but no sticker. Hoping to get this figured out soon because I can’t wait to get it on my car!
Thanks!
Thank you for the amazing job you are doing. Little Tripp has changed my life and I can only be honoured to give my contribution to fight against EB.
Great job. Thanks for all you do, simply amazing!
I am thinking of buying a shirt. I was wondering how the sizing is for adults. Are they unisex? Any help you have about sizing for the tshirts would be greatly appreciated. Thanks you! This is a great cause!
The shirts are unisex and they are not fitted. I would say that they Re pretty true to size.
Thanks!
i want to buy a butterfly t shirt
My daughter suffers with dystrophic eb, were are on a fixed income i want to buy some stuff is there any discounts? I am not asking for special treatment. I just want represent and sponsor the campaign not sure how?
I would like 2 order but feel the shipping is quite high. $7.50 for 3 smaller items.
Jennifer, what is it that you are trying to order? Shipping for all items is based on weight, it is possible the weight of an item may be in error. Please let me know, thank you!!
What percentage of the gear purchases go towards the research? Thanks!
Virginia, thank you for the question…a very good one! I donate 100% of all proceeds to Pioneering Unique Cures for Kids (PUCK), an organization that is very special to me. This means that once the cost of the item is covered, the remaining money is donated. Because PUCK is a parent driven initiative of the Children’s Cancer Research Fund they have no over head (CCRF covers costs for them) and therefore 100% of all money donated to PUCK goes to the research. I hope that this answers your question. Christie
Thank you so much for all you do…I completely understand that all proceeds go to the fund, thanks for explaining. I think I was thinking more about how much is left over after the shirts and ornaments etc. costs are covered. Anyway I think it is a great cause and the gear helps spread awareness which is great!
I have a lot of things id like to purchase like shirts car decals and anything else u might have. I’m very excited to purchase from you.
How do I purchase shirts:)??
Thank you so much for your interest! W are still getting the store set up an will properly have it complete by next week!!