Promoting recreational and adventurous experiences for families impacted by Epidermolysis Bullosa (“EB”) and educating citizens on the importance of civic engagement in the United States.
Who is EB Legal Aid Society?
The EB Legal Aid Society is a 501c3 non-profit charitable organization dedicated to supporting the EB families in the United States with practical services to help make living with EB more adventurous while alleviating some burdens.
About Us
Joe and Katie Murray founded the EB Legal Aid Society in 2018 through inspiration from their courageous daughter Ella. Born in 2007, Ella has endured the daily pain and suffering common with her form on EB with a combination of grace and mercy from God, the prayers and support of family and numerous friends, and her determination to live life to the fullest. She has achieved herculean heights in life against steep odds through hobbies that include competitive, adaptive air rifle shooting, fishing, hunting, outdoor life, cooking, and singing. Her experiences through Camp Spirit’s Colorado annual winter adventure camp has kindled in her a love of adaptive skiing, dogsledding, and horse riding. The EB Legal Aid Society is the Murray family’s avenue for supporting other EB families in their advancement of courageous spirits for their EB children throughout the United States, while highlighting the opportunities and freedoms bestowed to all families under the United States Constitution.
Our Services
EB Parents’ Respite Care
It’s typical that caretakers of EB children rarely can take a break away from the daily EB care routine. We seek to help provide respite to assist in recharging EB parents and caretakers’ energy and life outlook.
EB Kids Camps Scholarships
Special Camp offers unforgettable experiences for EB kids, led by trained counselors. We support families by helping cover travel costs, making a world-class camp adventure possible.
EB Legal Aid Call Center
EB families often face complex challenges with insurance, disability, and Medicaid due to the medical needs of EB care. Our call center helps them navigate these issues with support and guidance.
Civic Education Forums
We host educational briefings on Capitol Hill, in state legislatures, and at local civic events to engage citizens and spark discussion on key public policy issues impacting the U.S. Constitution.
Programs Supported by EB Legal Aid Society
EVENTS
Golf Fundraiser
Monday April 28th, 2025 @ Chantilly National Golf & Country Club
Thank you to all who attended and/or donated to our cause. Please click HERE to see videos & photos from the event.
Previous Events
9/14/2024 – United States House of Representatives Witness Testimony provided by Joel White (the House Oversight & Accountability Subcommittee on Healthcare & Financial Services)
4/8/2024 – Third Annual Charity Golf Event (Chantilly National Golf & Country Club)
2024 – Sponsorship of Wyoming Womens Foundation Annual Antelope Hunt for two EB young ladies
4/17/2023 – 2nd Annual Charity Golf Event (Chantilly National Golf & Country Club)
4/18/2022 – Inaugural Charity Golf Event (Chantilly National Golf & Country Club)
News & Media
Bufferfly Babies (Washington Post)
A rare disease makes these young girls’ skin break and peel at the slightest touch, like a butterfly’s wings,
CONTACT
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