FAQ

What is Team Butterfly?

Team Butterfly is a charity running team that participates in races internationally to benefit debra of America, an organization committed to finding a cure for Epidermolysis Bullosa (EB) and supporting the EB community. Our mission is to raise awareness, support afflicted families, and fund medical research for a cure; all in an effort to create a pain free world where no child or family will suffer from EB.

How did Team Butterfly get its name?

Those born with EB are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly. For that reason, the name ‘Team Butterfly’ was created in honor of the ‘Butterfly Children’.

What is debra of America?

The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) is the only U.S. nonprofit providing all-inclusive support to the EB Community, through funding research for a cure and by providing free programs and services for those with: Epidermolysis Bullosa (EB), “The Worst Disease You’ve Never Heard Of.” The mission of debra of America is to improve the quality of life for all people living in the United States with EB, their families, and caregivers through free programs and services while funding research to find a cure and treatments for Epidermolysis Bullosa.

What is Epidermolysis Bullosa?

EB is a debilitating and devastating genetic disorder that affects a child from birth. EB is extremely rare - a child has 1 in 20,000 chance of being born with EB - and is not specific to any ethnicity or gender. EB is defined as a group of diseases characterized by blister formation after minor trauma to the skin. A child who suffers from EB lacks a critical protein that binds his or her layers of skin together. This protein acts as the “velcro” that attaches one layer of his or her skin to the other. Without this “velcro,” when this child moves, his or her skin slides apart, blisters and shears off leading to severe pain, disfigurement, and in too many cases, a premature death. A child with a severe form of EB can have a 60% cumulative risk of dying by age 15 and nearly a 100% chance of developing an aggressive, painful and fatal form of skin cancer over the course of his or her shortened life.

What is the Jerusalem Marathon?

The Jerusalem Marathon is an international race, taking place on Friday march 17th, 2017, that includes a full marathon, half-marathon, and 10k course. This marathon enables you to explore the entire city of Jerusalem, run through its beautiful streets, and is considered one of the most scenic courses in the world. For more information related to the marathon or course, please visit the Jerusalem Marathon website at www.jerusalem-marathon.com.

Why should I run for Team Butterfly?

Team Butterfly affords you the opportunity to help save lives. Your participation not only be an incredible experience for yourself, but it will also enable YOU to potentially save the lives of and support the thousands of people affected by EB, allowing them to lead long, healthy, and pain-free lives! Because our team culture is family oriented, it greatly enhances the team atmosphere and provides for a close knit environment with a common goal. Once you join Team Butterfly, you will always be a part of the family!

What does Team Butterfly Provide for its runners?

With your commitment to raise $600, we provide all the necessary tools and gear to help you fundraise and run for Team Butterfly in the Jerusalem Marathon. We supply Kosher Mehadrin pre-race and post-race meals and nutrition to help our runners succeed. In addition to fundraising tips and motivation, we offer professional and personalized coaching and training provided by Coach Esther, an experienced marathon trainer. Team Butterfly is a family of runners that push each other to succeed and reach our individual and team goals! For more information, please check out our Jerusalem Marathon page by clicking here

I have never participated in a race or run, will I be able to finish?

Definitely! In fact, over 75% of our participants are first time runners! As long as you are committed to putting in the necessary time and effort, we ensure your success. Our comprehensive and personalized training program will help you reach your aspirations with maximum efficiency.

How long will I have to train for?

That depends on which race you are doing as well as your fitness level. Typically though, a runner will need to start training 12 weeks before the race; however, this can be shorter or longer depending on your experience and fitness level. Coach Esther will help you get started, find what is right for you, and guide you throughout your training. She will be there every step of the way!

Will I be able to raise the fundraising minimum of $600?

Certainly! In fact, most of our participants raise well above the minimum! When you register, you will set up your personal fundraising page where you can keep track of and accept credit card donations with ease. This page will make fundraising fun and simple and will allow you to customize it by adding pictures and bio. Additionally, you will receive a fundraising appeal letter template for you to customize and send out to family and friends, as well as tips and reminders from experienced fundraisers.

How can I donate to support EB in the Jerusalem Marathon?

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: 75 Broad Street, Suite 300, New York, NY 10004. Please make checks payable to "Debra of America" and put "Team Butterfly" and the name of the individual or team you wish to contribute towards on the memo line.

 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.

 How much of the funds raised actually goes to EB research?

Team Butterfly prides itself on keeping costs to a minimum. Our entire staff is comprised of volunteers and we do our best to work with vendors who feel a connection and commitment to our cause and will provide their services pro-bono or at a greatly discounted rate. We do this in order to maximize the amount of money that is directed towards EB research and supporting those with EB, which is of course our top priority.

How can I join Team Butterfly?

You can join right now! Just click here, fill out the registration, commit to raising $600 and you will be our newest member of the Team Butterfly family!