Association for the Bladder Exstrophy Community

Home
United States
Vero Beach, FL
Association for the Bladder Exstrophy Community

http://www.bladderexstrophy.com

The Association for the Bladder Exstrophy (A-BE-C) exists to ensure that all children born with bladder exstrophy have the opportunity to live full and productive lives and realize their greatest life purpose and potential. Patient services dealing with the birth defects of epispadias, bladder exstrophy, classic exstrophy, classic bladder exstrophy, cloacal exstrophy, from birth through adulthood.

09/01/2026

Madelyn is our next "BE Star" feature after receiving the 'Excellence: Leading the Way Award' at the AISES Regional Fair in Juneau for her research study, “The Effectiveness of Usnea’s Antibacterial Properties.”

Even more exciting, receiving this award earned Madelyn the opportunity to present her research at the AISES National Conference in October 2026!

Madelyn is in her senior year at Wrangell High School in Alaska, and plans on studying nursing or biochemistry at university next year. Madelyn is Alaska Native with Tlingit roots, and her own experiences navigating complex medical challenges have inspired a deeper interest in the traditional medicinal uses of Indigenous plants.

What an incredible accomplishment and opportunity to take her work to the national stage. Congratulations, Madelyn! We can’t wait to see where your curiosity, hard work, and research take you next.

08/27/2026

🌟 Meet Our BE Star: Connlan! 🌟

Today we’re cheering for 10-year-old Connlan from Prince Rupert, British Columbia! 🇨🇦🏒

Connlan and his hockey team recently became Division Zone Champions! Congratulations to Connlan and his entire team! ⭐💙

Have a milestone, victory, or passion to celebrate? Share your story, photo, or video with us! https://forms.gle/SFmuJxWGNan5e796A

08/25/2026

🌟 𝐌𝐞𝐞𝐭 𝐎𝐮𝐫 𝐁𝐄 𝐒𝐭𝐚𝐫: 𝐏𝐚𝐦! 🌟
Today we're celebrating Pam from Littleton, Colorado, who recently marked an incredible milestone, 30 years of marriage with her husband, Dave. 💙

"We've raised two terrific kids, had successful careers, and right before the (A-BE-C) conference we went cave kayaking in Santa Barbara, because our life together has been one big adventure with a lot of highs and some lows, just like the ocean tide!"

Congratulations, Pam and Dave, on 30 wonderful years together! Here's to many more years of making memories together! ⭐💙

Do you have a milestone, accomplishment, or special moment you'd like to celebrate? We'd love to feature YOU! https://forms.gle/SFmuJxWGNan5e796A

08/19/2026

🌟 Meet Our BE Star: Misty! 🌟

Some seasons of life are filled with extraordinary milestones, and Misty has plenty to celebrate!
💍 Got married.
🎓 Earned her RN School Nurse Credential.
🏥 Started a new role as District Nurse for a large high school district.

Congratulations, Misty, on these incredible personal and professional achievements! Your dedication, perseverance, and heart for serving others are an inspiration to the entire A-BE-C community. We can't wait to see what comes next! ⭐💙

Do you have a milestone, accomplishment, or exciting life update to share? We'd love to feature you in our series! Submit your story, photo, or video here: https://forms.gle/SFmuJxWGNan5e796A

08/12/2026

🌟 Meet Our BE Star: Layden! 🌟

Today we're celebrating Layden, whose love of music and dedication have helped them shine both in and out of the classroom. 🎶

Layden recently graduated from 8th grade at Royal Oaks School of the Arts, learning to play not just one instrument, but three: the bass, viola, and drums! From performing on stage to growing as a musician, Layden's hard work and creativity are something to celebrate.

Congratulations, Layden, on this incredible milestone! We can't wait to see where your talents take you next. ⭐💙

Do you have a milestone, accomplishment, or passion you'd like to share? We'd love to feature you in our series! Submit your story, photo, or video here: https://forms.gle/3aHRFuC9DZwgucpYA

08/05/2026

⭐ is a series celebrating the accomplishments, passions, and milestones of people living with bladder exstrophy.

This week's shining moment comes from Isabella:
"While attending the University of Utah, I had the privilege to be involved in our student section (The MUSS - Mighty Utah Student Section) for two years. I led the Olympic Sports committee and helped organize giveaways, fundraising, and student engagement. Being able to see my work in various games and alumni events was truly amazing! From Big Noon Kickoff, College Gameday, NCAA Gymnastics Championships, volunteering, and numerous football games - it was my favorite and most rewarding part of college. GO UTES forever!"

07/23/2026

One of the most memorable moments of the 2026 A-BE-C Annual Conference in Los Angeles was celebrating Thomas Vincent, recipient of this year’s Courage to Shine Award. The award recognizes individuals who embody resilience, inspire others, and make a meaningful impact within the bladder exstrophy community. Thomas’s journey exemplifies each of those qualities.

As part of accepting the award, Thomas shared his personal story, reflecting on the path that led him from a newborn facing complex surgeries to becoming a research scientist, patient advocate, world traveler, and soon-to-be 30-year-old. His message was one of hope: while bladder exstrophy has shaped his life in profound ways, it has never defined what he could achieve. His story is a powerful reminder that a diagnosis may influence your path, but it does not determine your future.

https://www.bladderexstrophy.com/courage-to-shine-2026-thomas-vincent/?fbclid=IwY2xjawTQchZwZG9mAWV4dG4DYWVtAjExAHNydGMGYXBwX2lkEDIyMjAzOTE3ODgyMDA4OTIAAR6y1M7ueBriGB1h_KNJGdVYsMQQVx8XK_OGGae3NAG3AS6y1EB6b-l7V3vQpw_aem_Ohpyq8lJCmrw32OOe0m1SQ

07/21/2026

💙 The Future of Exstrophy Care Starts With Our Community.

Every survey response adds to a growing body of knowledge that can help researchers better understand life with bladder exstrophy, cloacal exstrophy, and epispadias across every stage of life.

Whether your journey has included challenges, milestones, surgeries, or successes, your experience matters. By sharing it, you're helping improve care, guide future research, and support the next generation of patients and families.

If you or your child are eligible, please consider taking the L.I.F.E. Outcomes Survey today.
Together, we're building a stronger future for the entire exstrophy community. 💙

🔗 https://loom.ly/SxHQHUk

07/16/2026

🙌 A big thank you to California Medical Pharmacy (CalMed) for sponsoring this year's Annual Exstrophy Conference!

CalMed is an independent family-owned pharmacy that provides nutritional support, durable medical equipment (DME), and home medical supplies. They work alongside physicians, hospitals, health systems, managed care organizations, and community agencies to provide patients with complex medical needs the services they depend on.

For more than 65 years, CalMed has been a trusted lifelong nutrition partner for infants, children, and adults living with rare metabolic disorders and other chronic medical conditions. Their commitment extends beyond delivering products—they strive to provide the continuity, expertise, and personalized support to help patients and their caregivers navigate lifelong care with confidence.

We're grateful for partners like CalMed who help make this conference possible and support individuals and families living with bladder exstrophy. 💙

07/10/2026

𝑮𝒆𝒕 𝑹𝒆𝒂𝒅𝒚 𝒕𝒐 𝑾𝒂𝒍𝒌 𝒕𝒉𝒆 𝑹𝒆𝒅 𝑪𝒂𝒓𝒑𝒆𝒕!😎📸
Submit your shining moments to showcase the strength, resilience, and accomplishments that make the A-BE-C community so inspiring.

Whether you've graduated, started a new job, reached a personal goal, become a parent, overcome a challenge, or experienced another meaningful milestone, we want to celebrate your journey. Children, teens, and adults are all encouraged to participate - even if you're not attending the conference, as we will be sharing the highlight reel on social media!
Submit your shining moment: https://loom.ly/YroXJsE

Address

Vero Beach, FL

Website

http://www.bladderexstrophy.com/

Alerts

Be the first to know and let us send you an email when Association for the Bladder Exstrophy Community posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Want your organization to be the top-listed Non Profit Organization in Vero Beach?