Association for the Bladder Exstrophy Community

06/04/2026

Chloe Fleisher, a Grade 12 student at St. Patrick Catholic Secondary School, has received a MIRA Award for Excellence at the National Theatre School (NTS) DramaFest Provincial Showcase for her role as co-writer and dramaturg for the original play, Exstrophy.

Along with Fleisher’s MIRA Award, Exstrophy was also honoured with the Outstanding Choreography Award at the provincial showcase.

“Mainstream media antagonizes health conditions, framing them as battles to be won. Patient experiences are reduced to drama, doctors are glorified, and the person within the condition is ignored,” said Fleisher. “Exstrophy explores the nuance of living with a hidden disability and embraces coexisting with medical challenges, rather than defeating them.”

We couldn't be more proud of this amazing young woman and can't wait to see what she does next!

https://loom.ly/dg89-ZE

The cast and crew of St. Patrick Catholic Secondary School's award-winning production of Exstrophy. Photo: Toronto Catholic District School Board. Chloe

06/04/2026

⏰ Traveling Friday? Working that morning? Stuck in LA traffic?
No problem.
The Friday Welcome Experience is designed as an open-house style arrival:
✨ Come when you can
✨ Drop your bags at the hotel
✨ Walk into the Welcome Party anytime
Your badge will be ready. Your community will be waiting.
No pressure. No stress. Just connection.
https://www.bladderexstrophy.com/annual-conference/

06/02/2026

📢 𝐀-𝐁𝐄-𝐂 𝐌𝐞𝐝𝐢𝐜𝐚𝐥 𝐀𝐝𝐯𝐢𝐬𝐨𝐫𝐲 𝐁𝐨𝐚𝐫𝐝 𝐔𝐩𝐝𝐚𝐭𝐞

A-BE-C is thrilled to share exciting updates to our Medical Advisory Board and to celebrate the continued leadership of some of the most respected experts in bladder exstrophy care.

For many years, Dr. Aseem Shukla has been a valued member of the A-BE-C Medical Advisory Board, including serving as Board Chair. We are delighted to congratulate him on his new roles as 𝐂𝐡𝐢𝐞𝐟 𝐨𝐟 𝐏𝐞𝐝𝐢𝐚𝐭𝐫𝐢𝐜 𝐔𝐫𝐨𝐥𝐨𝐠𝐲 at Cohen Children's Medical Center, 𝐒𝐲𝐬𝐭𝐞𝐦 𝐕𝐢𝐜𝐞 𝐏𝐫𝐞𝐬𝐢𝐝𝐞𝐧𝐭 of the Pediatric Urology Service Line, and 𝐃𝐢𝐫𝐞𝐜𝐭𝐨𝐫 𝐨𝐟 𝐏𝐞𝐝𝐢𝐚𝐭𝐫𝐢𝐜 𝐆𝐥𝐨𝐛𝐚𝐥 𝐒𝐞𝐫𝐯𝐢𝐜𝐞𝐬 for Northwell Health.

This transition means children with bladder exstrophy and epispadias can once again receive specialized surgical care in New York State, bringing world-class expertise closer to families throughout New York City, Long Island, and the greater Tri-State region.

Dr. Shukla is among the most experienced bladder exstrophy surgeons in the United States, having participated in more than 200 exstrophy closures as part of multidisciplinary teams across two continents. He is also a co-founder of the International Bladder Exstrophy Collaborative and Editor-in-Chief of *Bladder Exstrophy and Epispadias: A Compendium*. We are grateful for his long-standing friendship, leadership, and commitment to the exstrophy community.

✨ 𝐖𝐞 𝐚𝐫𝐞 𝐚𝐥𝐬𝐨 𝐡𝐨𝐧𝐨𝐫𝐞𝐝 𝐭𝐨 𝐰𝐞𝐥𝐜𝐨𝐦𝐞 𝐭𝐰𝐨 𝐝𝐢𝐬𝐭𝐢𝐧𝐠𝐮𝐢𝐬𝐡𝐞𝐝 𝐧𝐞𝐰 𝐦𝐞𝐦𝐛𝐞𝐫𝐬 𝐭𝐨 𝐭𝐡𝐞 𝐀-𝐁𝐄-𝐂 𝐌𝐞𝐝𝐢𝐜𝐚𝐥 𝐀𝐝𝐯𝐢𝐬𝐨𝐫𝐲 𝐁𝐨𝐚𝐫𝐝:

🔹 𝐃𝐚𝐧𝐚 𝐖𝐞𝐢𝐬𝐬, 𝐌𝐃
Attending Pediatric Urologist at Children's Hospital of Philadelphia and Associate Professor of Urology in Surgery at the Perelman School of Medicine at the University of Pennsylvania.

🔹 𝐏𝐫𝐨𝐟𝐞𝐬𝐬𝐨𝐫 𝐈𝐦𝐫𝐚𝐧 𝐌𝐮𝐬𝐡𝐭𝐚𝐪
A globally recognized pioneer in bladder exstrophy care with more than 35 years of clinical experience, including 25 years at Great Ormond Street Hospital in London.

💙 We are incredibly fortunate to have such exceptional leaders helping guide A-BE-C's mission to support individuals and families affected by bladder exstrophy and epispadias. Please join us in congratulating Dr. Shukla and welcoming Dr. Weiss and Professor Mushtaq to the A-BE-C Medical Advisory Board!

06/01/2026

One of the biggest questions we hear: “What will this trip actually cost?”
We’ve worked hard to keep ABEC accessible for families:
🍳 Breakfast and lunch on Saturday is included
🚍 Shuttles to and from CHLA are provided
🍽️ Friday night dinner is covered
💬 Registration remains highly affordable ($55–$85)
🏨 Hotel room rates are $239/night (well below the seasonal average for most US destinations)
And around Burbank, you’ll find plenty of budget-friendly dining options just steps from your hotel.
This isn’t a “figure it out on your own” trip—it’s built for families.
https://www.bladderexstrophy.com/annual-conference/

05/28/2026

What’s holding you back from registering for the A-BE-C Annual Conference in Los Angeles?
We know “Los Angeles” can sound overwhelming—but we designed the experience to be smooth and stress-free from the moment you land.
✔️ Fly into Burbank (BUR) instead of LAX
✔️ Stay at the Hilton Garden Inn Burbank for a reduced group rate
✔️ Use our complimentary shuttles to CHLA and conference events
No navigating LA traffic. No guesswork. No stress.
Just arrive—we’ll take care of the rest.
REGISTER NOW: https://www.bladderexstrophy.com/annual-conference/

05/26/2026

The Adult Patient Advisory Council invites you to a dedicated Adult Patient Session (18+) as part of this year’s A-BE-C Annual Conference experience.

📅 Friday, July 17
🕑 2:00 PM – 5:00 PM
📍 Hilton Garden Inn Burbank Los Angeles

This session is designed specifically for adults living with bladder exstrophy (BE), cloacal exstrophy (CE), epispadias, and related conditions—creating a space to connect, share, and be heard.

Together, we will focus on:
💬 Building meaningful connections within the adult exstrophy community
🧭 Identifying age-specific needs and challenges
🔍 Exploring ways to improve lifelong management and care
🤝 Learning from shared lived experiences in an open, supportive environment

This patient session will be held at the hotel, and will not conflict with registration and other conference events.
Sign up: https://www.bladderexstrophy.com/annual-conference/

05/20/2026

This video features a powerful presentation given by Pamela Artigas to leading clinicians and experts in bladder exstrophy care from around the world.

Drawing directly from the experiences shared by 133 families, Pamela highlighted the urgent need for better communication, greater transparency, and a more united front when it comes to caring for children and families affected by bladder exstrophy.

The presentation challenged providers to look beyond surgical outcomes alone and truly listen to the emotional and lifelong impact families experience while navigating diagnosis, treatment decisions, and ongoing care.

Watch the presentation below. ⬇️

This presentation was delivered during a recent medical conference and marked an important step toward greater collaboration within the bladder exstrophy com...

05/19/2026

𝐅𝐞𝐚𝐭𝐮𝐫𝐞𝐝 𝐒𝐩𝐞𝐚𝐤𝐞𝐫: 𝐃𝐫. 𝐈𝐦𝐫𝐚𝐧 𝐌𝐮𝐬𝐡𝐭𝐚𝐪

We are honored to welcome Professor Imran Mushtaq, one of the world’s foremost leaders in pediatric urology, to this summer’s conference.

With more than 35 years of clinical experience, including 25 years as a Consultant Paediatric Urologist at the world-renowned Great Ormond Street Hospital in London, Professor Mushtaq is globally recognized for his pioneering work in bladder exstrophy care. He is also an internationally respected educator of the specialized Kelly Procedure.

At this year’s conference, he will present a clear, unbiased overview of bladder exstrophy management designed specifically for parents and families. Following his talk, he will join an interactive Q&A session - offering a rare opportunity to ask your questions directly to one of the leading experts in the field.

We are deeply grateful for his time and commitment to supporting our community, especially given his demanding international schedule.
Register now: https://www.bladderexstrophy.com/annual-conference/

05/14/2026

For years, families affected by bladder exstrophy have carried the weight of confusion, fear, and impossible decisions during some of the most vulnerable moments of their lives.

𝑩𝒖𝒕 𝒔𝒐𝒎𝒆𝒕𝒉𝒊𝒏𝒈 𝒓𝒆𝒎𝒂𝒓𝒌𝒂𝒃𝒍𝒆 𝒉𝒂𝒑𝒑𝒆𝒏𝒆𝒅 𝒓𝒆𝒄𝒆𝒏𝒕𝒍𝒚.

Global leaders in bladder exstrophy care came together with a shared goal: to listen to families, learn from one another, and move beyond division toward greater collaboration and transparency in care.

The conversation was driven by the voices of 133 families who shared their honest experiences with diagnosis, surgery, trust, and life beyond the operating room, helping spark a meaningful shift in how providers approach the future of exstrophy care.

Read the full blog below. ⬇️

A-BE-C shares groundbreaking survey data from 133 bladder exstrophy families, sparking a historic global collaboration among leading surgeons focused on trust, transparency, and improving outcomes for every child.

05/08/2026

🤩Step Into the Spotlight🤩
We want to celebrate YOU at the A-BE-C Conference this year! We’re creating a highlight reel of incredible BE stars, showcasing the strength, resilience, and unique journeys within our community.

Send us your shining moment, your biggest accomplishment, the achievement that makes you the most proud!
Here are some ideas to help spark inspiration—your “shining moment” can be anything that feels meaningful to you:

🎓 Graduating or reaching an academic milestone
🏅 Winning a game, race, or sports achievement
🎨 Finishing a creative project (art, music, writing, etc.)
🎤 Performing on stage or speaking in front of a group
💪 Overcoming a personal challenge or fear
🏕️ Attending camp or an event like Youth Rally
🚗 Learning a new life skill (driving, cooking, independence milestones)
💼 Starting a new job or volunteer role
🧡 Supporting or mentoring others in the BE community
🌍 Traveling somewhere new or trying something outside your comfort zone
📸 A moment that simply makes you feel proud of who you are

No moment is too big or too small—if it matters to you, it matters to us.
SUBMIT YOUR MOMENTS HERE: https://loom.ly/YroXJsE