What is Epidermolysis Bullosa (EB)?
EB is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation. Even the slightest touch or friction can cause the skin to break resulting in painful blisters and open wounds that are often compared to third-degree burns.
What does the name mean?
The skin is made up of a number of different layers. The outer is called the epidermis; the inner layers are the dermis. “Bullosa” is the name for a blister and “lysis” means breakdown. Simply put, Epidermolysis Bullosa means the breakdown and blistering of the outer skin.
How Common is EB?
In the United States, about 1 in 20,000 babies are born with some type of EB. Therefore, only approximately 200 children are born with EB each year.
Is there a cure for EB?
Unfortunately, to date, there is no cure for EB, only wound care treatment and pain management.
How is EB treated?
The most severe forms of EB require meticulous care similar to that given to burn patients. Standard treatment for EB patients is daily wound care, bandaging and pain management.
Is EB Contageous?
No. EB is an inherited genetic disease, not a contagious one. Children are born with EB because of a mistake in one of the genes that make skin protein. EB cannot be transmitted/developed due to exposure.
What does Team Butterfly do to Help?
Team Butterfly, in collaboration with debra of America, is dedicated to providing all-inclusive support to the EB Community. To reach our goal of an EB-free world, Team Butterfly raises money in order to fund research for a cure and provide free programs and services for those with EB. In addition, due to the public being minimally exposed to an orphan disease like EB, Team Butterfly strives to create much needed awareness for the cause and those who suffer from this terrible and debilitating disease.
How can I Donate to Support EB?
We currently accept donations by mail and online through our website. To donate online, please click here. To donate via mail, please send donations to the following address: Team Butterfly, 311 Walton Street, West Hempstead, New York 11552. If you are donating via a check, please make the check out to Debra of America and put Team Butterfly on the memo line.
How can I raise money to benefit Team Butterfly's mission?
At this time, you can raise money and support Team Butterfly's mission by joining our fundraising team in the 2017 Jerusalem Marathon, Half-Marathon, & 10k. In addition, you will also be able to support our fundraising and awareness efforts by getting involved with our other events and programs that we are excited to be announcing over the next few months!
Are there other ways to get involved with Team Butterfly?
Absolutely! We are always thrilled for new people to join the movement in anyway they can! Some great ways to get involved include interning, volunteering, and of course raising funds and awareness for EB. Another wonderful way to get involved is by proposing a new ‘Supporter Led’ program or event, and working with us to plan, implement, and lead your event or program. Past supporter led initiatives have included, but are not limited to, Color Runs, galas, a speech or info session at a school or community center, and concerts. We always love to hear the ideas and suggestions of our supporters. We LOVE a challenge, so, no matter how simple, grand, intricate, or ludicrous your proposal is, we will always do our best to make it a reality! As Team Butterfly founder David Beiss says, “Go big, or go home!”.
To propose a new event or program, please send an email proposal to firstname.lastname@example.org. In your proposal, please include the following: overall description of your event or program, event/program type, proposed location and date, a fundraising goal (if applicable), an estimate of costs, potential sponsors, how much you plan to charge for admission/how much your will ask participants to fundraise (if applicable), and what you would like Team Butterfly to do or help with.
How much of donated and raised funds go toward achieving Team Butterfly’s mission?
All money raised from Team Butterfly events and programs, minus the cost of the event or program, goes towards funding ongoing EB research and to supporting EB patients and their families. Additionally, all staff within the organization are volunteers who donate their time and do not receive a salary or compensation of any kind.
Is Team Butterfly a registered 501(c)(3) tax exempt organization?
Team Butterfly is not a registered 501(c)(3) tax exempt organization at this time. However, debra of America serves as Team Butterfly’s fiscal sponsor. Therefore, this enables Team Butterfly to accept and receive grants and tax-deductible donations under the debra of America tax exempt status.