Bladder Exstrophy, Resilience, and Global Advocacy: The Journey of Thomas Exler

By Thomas Exler
Vice President, Association for the Bladder Exstrophy Community (A-BE-C) | Founder, Courage to Shine™

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Introduction

Born with a rare congenital birth defect known as bladder exstrophy, I have spent my life navigating medical complexities while building meaningful connections with individuals, families, and professionals around the globe. Rather than viewing my condition as a limitation, I have long chosen to see it as the foundation for a purposeful life of service, advocacy, and education.

Bladder exstrophy has brought me numerous challenges, including multiple surgeries and long hospital stays as a child. Yet, it also offered me countless blessings—chief among them, the opportunity to become a lifelong advocate for others living with similar conditions.

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Understanding Bladder Exstrophy

Bladder exstrophy is a complex congenital anomaly in which the bladder is turned inside out and exposed outside the abdominal wall. The term “exstrophy” comes from the Greek ekstriphein, meaning “to turn inside out.” The condition is extremely rare, occurring in approximately 1 in 40,000 live births. It often requires multiple reconstructive surgeries and, in many cases like mine, leads to the formation of a urostomy.

In 1969, prior to my fourth birthday, it was determined that my bladder tissue could not be used for reconstruction. I underwent surgery for a urostomy (ileal conduit), and a few months later, my bladder was surgically removed. From a very young age, I became intimately familiar with life as a patient with a stoma.

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A Foundation Built on Family and Support

I was fortunate to have been raised by a compassionate and capable family. My mother, a newly trained nurse at the time of my diagnosis, became my strongest advocate. She had previously cared for a child with a colostomy during her nursing training—a poignant coincidence that later informed her approach to my care.

My mother and my pediatric surgeon saw a need for greater community support for families with children living with stomas. Together, they co-founded the Children’s Tri-State Ostomy Association, based in Pittsburgh, Pennsylvania. It was the first known organization in the world dedicated exclusively to children with ostomies, and it remained active until 1982.

Being part of this organization from such a young age gave me early insight into the challenges and triumphs faced by others. I never had to wonder whether I was alone in my experience—because I always knew I wasn’t.

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Advocacy Through Experience

Throughout my life, I have been committed to using my experiences to support others. After college, I began working in healthcare administration, a field I continue to work in today. This professional background gave me both the resources and flexibility to dedicate myself to patient advocacy on a national and international scale.

In 2001, I founded the Young Adult Network under the United Ostomy Association (UOA), creating a platform for young adults living with intestinal and urinary diversions. I also served as a long-term counselor for the UOA Youth Rally, a life-changing summer camp for teenagers living with ostomies and similar conditions.

In 2010, I established Courage to Shine™, a patient-centered initiative that honors individuals born with genitourinary birth defects who have grown to become outstanding role models. The project also serves as a platform for motivational presentations and global outreach.

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Global Engagement

My advocacy work has taken me across the world. I have delivered keynote speeches and led workshops in:

• Australia (BEECH Community Conference, 2010)
• United Kingdom (Breakaway Foundation, 2011)
• Germany (Exstrophy Group, Fulda, 2008)
• Spain (ASEXVE Conference, 2012)
• Iceland (Ostomy and Exstrophy support presentations, 2003 and 2010)
• Denmark and Canada (International Ostomy Association 20/40 Forums, 2019 and 2001)

In each location, I’ve seen common threads: families searching for hope, patients seeking community, and professionals eager to better understand the lived experience. It is a privilege to offer reassurance, guidance, and visibility to others on similar journeys.

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Personal Challenges and Recognition

In 2014, I suffered a stroke that temporarily halted my professional work. While the setback was significant, I made a full recovery and returned to advocacy with renewed determination.

In recognition of my service, I was awarded the 2015 Jefferson Award for Public Service in Pittsburgh. I have also been nominated for the Values.com Everyday Hero Award and the Global Genes RARE Champions of Hope Award.

Beyond professional honors, I have remained active in my local community, coaching youth sports and serving as a board member for nonprofits including Jamie’s Dream Team, which grants wishes to children and adults with life-threatening conditions.

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Looking Ahead

As vice president of the Association for the Bladder Exstrophy Community (A-BE-C), I continue to work toward a world where no one feels isolated due to a medical diagnosis. The rise of digital communication and international collaboration has transformed how we support patients and families. Today, no one should have to wonder, “Am I alone?”—because the answer is emphatically no.

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Final Reflections

Although I never asked for a stoma, I have come to view it as a gift. Not because it made life easier, but because it shaped my path in ways that enabled me to support others, build communities, and bring light where there was once uncertainty.

I often tell people: “Life is not about the gifts you’re given, but how you use them.” That belief has guided me through every step of this journey.

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Contact Information

Thomas Exler
📧 Email: texler@courage-to-shine.org
🌐 Courage to Shine: www.courage-to-shine.org
🌐 A-BE-C: www.bladderexstrophy.com

🌐Jamie’s Dream Team: www.jamiesdreamteam.org/  

Thomas Exler: A Life of Advocacy, Outreach & Global Impact

A Story of Turning Challenge into Purpose and Creating Community Around the World

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“Although I never asked to have a stoma, I truly believe it should never stop anyone from doing what they want to do or accomplish in life.”

— Thomas Exler

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✨ A Global Advocate with a Local Heart

Born with a rare condition called bladder exstrophy, Thomas Exler grew up facing challenges that most children never experience. But from a young age, he was also given something powerful—support, compassion, and the belief that he was never alone.

That mindset helped shape him into a lifelong advocate, educator, and global connector. Today, Thomas is the founder of Courage to Shine™, Vice President of A-BE-C, and an international speaker and mentor for families and patients affected by genitourinary conditions. He’s volunteered with youth, started support networks, and spoken on four continents—always with the goal of helping others believe in their own future.

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📚 Select Publications & Presentations

• “Living with Bladder Exstrophy and a Urostomy” – Personal story
• Breakaway UK (2011) – Courage to Shine™ team leader and speaker
• ASEXVE Conference – Spain (2012) – Keynote presentation on resilience and growth
• BEECH Conference – Australia (2010) – International workshop speaker
• Germany Exstrophy Group (2008) – Community speaker and mentor
• Youth Rally (1992–2003) – Longtime counselor and mentor to teens with ostomies

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🌍 Global Reach

Thomas has delivered inspirational presentations and built patient communities across the USA, United Kingdom, Spain, Germany, Australia, Iceland, Denmark, and Canada.

Thomas presenting with the Courage to Shine™ team in Ávila, Spain

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💬 Testimonials

“Thomas gave us hope when we needed it most. Hearing from someone who has lived with this condition and succeeded—it was priceless.”
— Parent, Breakaway UK

“His talk at our conference moved the entire room. Thomas shares not just knowledge, but heart.”
— Dr. Maria Sánchez, ASEXVE, Spain

“I met Thomas at Youth Rally when I was 14. He changed how I saw myself, and now I work in healthcare thanks to his example.”
— Former camper, USA

“He’s a role model who reminds us all that advocacy is born from empathy and lived experience.”
— Misty Blue Foster, Advocate and Speaker

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🏆 Honors & Recognition

• Jefferson Award for Public Service, Pittsburgh (2015)
• RARE Champion of Hope – Advocacy Nominee, Global Genes (2015)
• Everyday Hero, Foundation for a Better Life / Values.com (2015)

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💡 Programs & Organizations

• 🌟 Founder, Courage to Shine™
• 🌍 Vice President, A-BE-C
• 🎁 Board Member, Jamie’s Dream Team
• 🧒 Former Counselor, United Ostomy Association Youth Rally
• 👥 Founder, UOA Young Adult & Teen Networks

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📞 Contact Thomas Exler

📧 Email: texler@courage-to-shine.org
🌐 Website: www.courage-to-shine.org
🔗 LinkedIn: Thomas Exler
📸 Instagram: @couragetoshine_org
🐦 Twitter/X: @couragetoshine

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🎙️ Listen & Watch

Thomas has been featured in media outlets and podcasts—bringing his message to broader audiences:

• Search Thomas Exler on Spotify, Apple Podcasts, and YouTube
• Featured interviews and videos available on Courage to Shine™ YouTube Channel

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🕊️ Final Words

“It’s not about the gifts you are given in life.
It’s about how you use those gifts that’s important.”
— Thomas Exler