debra of America

Kindness isn’t just about holding doors or buying someone a coffee —it’s about seeing people for who they truly are. ✨ This #RandomActsofKindnessDay, take a moment to listen and learn. That’s how we make the world a kinder place for those living with Epidermolysis Bullosa (EB).❤️

“The impact of sharing your journey with others is a huge one.” - Ariana C., 2021 Mentor debra of America is calling on compassionate, dedicated adults (ages 18+) in the EB Community to become mentors and make a lasting difference in the lives of young people. By sharing your own journey of growing up with EB, you’ll provide invaluable support, guidance, and a sense of belonging to a tween or teen facing similar challenges. Learn more and apply at https://lnkd.in/gjHUM5kp

Protect Disability Rights for the EB Community! 🚨 A new lawsuit is threatening Section 504, a federal law that protects people with disabilities, including those with EB, by ensuring access to school accommodations, healthcare, and essential services. If overturned, millions could lose these critical rights. 📢 Take action now! Send an email to Congress through debra’s secure email system to defend Section 504 at https://lnkd.in/gfY_fW9w Learn more about why Section 504 matters for the EB Community in our latest blog post at https://lnkd.in/gGyajxVM #ProtectSection504 #Section504 #DisabilityRights

“I have a warrior daughter with immense strength and amazing determination!” 💪✨ Born with Junctional Epidermolysis Bullosa (JEB), a rare and painful genetic disorder, Brooklyn faces daily challenges with resilience. From navigating complex medical needs to battling insurance for essential care, Brookie’s mom, Morgan, shares their powerful story of love and learning. Read their story at https://lnkd.in/gqV5Mu8t

In 2024, debra of America’s Wound Care Distribution Program was our most utilized program —highlighting the ongoing struggle those with Epidermolysis Bullosa (EB) face in accessing vital wound care supplies. With costs exceeding $80,000 per month and insurance often falling short, too many families are left without the essential supplies they need. That’s why we provide wound care supplies at no cost to individuals and families nationwide. If you need support, we’re here to help. Learn more at https://lnkd.in/gJnMfsb4 (📸: The amazing Rachel, living with EB, and Mom.❤️)

Watch Now: Wound Care Essentials for EB Families! ✨🎥 Our latest webinar is now available to watch on EB Connect, packed with expert advice on navigating daily wound care with confidence. Plus, hear questions from the EB Community —answered! 📺 Watch at https://lnkd.in/gaYPhRG9 ⏰✨ A reminder for the EB Community: See your doctor at least once a year to renew important prescriptions like those for bandages and other essential supplies. Staying proactive ensures uninterrupted care. Huge thanks to our partner, Krystal Biotech, for supporting this important webinar!

📢 Calling the EB Simplex Community! BioMendics and debra of America are seeking participants for an important EB Simplex Focus Group to help shape discussions with the U.S. FDA and drive treatment development. There are currently no FDA approved treatments for EBS but we’re working to change that, and your voice is key! 🔑 👉 Who can participate? Individuals (ages 12+) with EB Simplex, or parents/caregivers of someone with EB Simplex. U.S. Only. 👉 How to participate? Complete the short form at https://lnkd.in/gGT6HX-i See PDF for details on what to expect: https://lnkd.in/gsyrvkT7

Wishing the best of luck our incredible #TEAMDEBRA runners, Ivana and Sarah, as they take on the #MiamiMarathon tomorrow! Both are running in honor of the EB warriors in their lives. 🏃♀️🏅 Ivana (pictured) is running in memory of her sweet daughter, Margot. She shares “I run for EB because it took my beautiful daughter, Margot, from us far too soon. Born with severe junctional EB, Margot endured unimaginable pain in her short life, yet she was the strongest person I’ve ever known.” ✨ ❤️ You can support Ivana’s efforts by donating towards her fundraising goal at https://lnkd.in/gmCPQ3WE Please join us in cheering these extraordinary women by dropping a 👏 in the comments below!

Now Enrolling: Youth Mentorship Program!🚀 January is #NationalMentoringMonth, and we’re thrilled to open applications for debra of America’s Virtual Youth Mentorship Program! This program pairs tweens & teens with Epidermolysis Bullosa (EB) with inspiring young adult mentors who also have EB. Through these one-to-one matches, our mentors are a source of support and inspiration on a variety of topics, helping your child reach their full potential! 👉 Enroll as a mentor or mentee at https://lnkd.in/gA2YhX3Z

“Matthew was born with an open wound on his entire left foot. His dad and I were immediately questioned about skin disorders that run in the family. We were both unaware of anything.” Matthew’s mom, Jessica, shares their emotional story of navigating life with Epidermolysis Bullosa (EB) and their hopes for a brighter future.✨❤️ Read their story at https://lnkd.in/gqhMXQZr