We are officially a 501(c)(3) organization, and our Mission is three-fold: 1. Raise Awareness 2. Fund vital research and 3. Aid children with EB and their families in any way we can. We take in donations for the following purposes:
Put on Fundraisers or other Events to further support our cause and raise awareness
Partner with and donate to other well-known EB-related foundations and medical professionals/researchers working hard to support EB families and find treatments/an eventual cure
Send free, customized "Butterfly Bundle" Welcome Boxes to support new EB families with bamboo clothing, special blankets, self-care and family-building items, books, and resources/support for all members of the family, including siblings
Meeting the needs of individuals and their families still living with EB by filling any gaps with our "Wings of Care" initiative (examples include providing emotional support, finding resources, or providing much needed medical supplies, special clothing, equipment, etc. depending on what the individual or family needs in that moment)
Support families that have lost a loved one to EB with free, specially curated "Forever in Flight" Memorial Boxes, resources in their area, and ongoing support as well
Work with the EB Community as a whole to develop educational materials for doctors and families based on patient/family experiences to help make navigating EB at least somewhat easier for everyone involved and presenting these materials at conferences and other related events to reach as many people as possible.
Popular Podcasts
Las Culturistas with Matt Rogers and Bowen Yang
Ding dong! Join your culture consultants, Matt Rogers and Bowen Yang, on an unforgettable journey into the beating heart of CULTURE. Alongside sizzling special guests, they GET INTO the hottest pop-culture moments of the day and the formative cultural experiences that turned them into Culturistas. Produced by the Big Money Players Network and iHeartRadio.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
The Brothers Ortiz
The Brothers Ortiz is the story of two brothers–both successful, but in very different ways. Gabe Ortiz becomes a third-highest ranking officer in all of Texas while his younger brother Larry climbs the ranks in Puro Tango Blast, a notorious Texas Prison gang. Gabe doesn’t know all the details of his brother’s nefarious dealings, and he’s made a point not to ask, to protect their relationship. But when Larry is murdered during a home invasion in a rented beach house, Gabe has no choice but to look into what happened that night. To solve Larry’s murder, Gabe, and the whole Ortiz family, must ask each other tough questions.