This was our 5th trip to Uganda, and while every year leaves us feeling blessed, accomplished, exhausted, fulfilled, and yes, even stressed, this year was different.

The 2024 Annual Exstrophy Conference was held in Milwaukee, WI and proudly hosted in conjunction with Children’s Wisconsin.

A-BE-C recently presented its Richard W. Grady Humanitarian Award to Dr. Joao Luiz Pippi Salle, Professor of Urology, SickKids Hospital and Co-Director of the Center for Pelvic Reconstruction.

We are committed to creating a self-sustaining bladder exstrophy community in Sub-Saharan Africa. On our upcoming Family Education Day, over 50 families from Uganda, South Sudan, and Burundi will come together with our Global Care team for a day focused on education, empowerment, and connection.

Rachel Althizer, 32, received the 2024 Courage to Shine award at the International Conference in Milwaukee, WI.

The A-Be-C Uganda initiative continues to grow with each passing year. This October, A-BE-C was represented by a dedicated team of surgeons, nurses, a social worker, and patient advocates.

Realizing that care for the entire patient – beginning with appropriate surgical counseling and preparation, to psychosocial support and postoperative management – is key to successful outcomes, the sessions focused on the challenges patients and families face through a spectrum of discussions and provide tools to show that BE Doesn’t Limit ME!  

A-BE-C recently presented its Richard W. Grady Humanitarian Award to Dr. William Reiner, Child and Adolescent Psychiatry, Urology. Dr Reiner, a world-renowned Child and Adolescent Psychiatrist, spent his career focused on the psychological aspects of bladder exstrophy. 

Like many of yours, our story is one of Acceptance of our son’s diagnosis, Bravery in the face of the unknown, Empathy for one another, Courage instead of fear, and Faith in God’s plan.

The first time you meet Dr. Boateng Nimako, you can tell he’s a special individual. It’s not only his calming voice or infectious smile, but also the way he fiercely advocates for his patients.

After two years of delays due to Covid, and then another delay due to an Ebola outbreak in Uganda, the US team was finally able to hold our second workshop at Uro Care in Kampala. Our committed team treated, connected with and supported 23 families from all over Uganda.

A-BE-C is so proud to be a part of the annual Bladder Exstrophy workshop which celebrated its 15th year in January!!! After two days of extensive discussion and five days of complex surgeries, I can’t thank Civil Hospital enough for their ongoing commitment to our beautiful children and families living with bladder exstrophy.

Anna Artigas, daughter of Executive Director Pamela Artigas, is traveling with A-BE-C for the 2023 International Exstrophy Workshop in Uganda as part of a service project to provide support to teens with exstrophy.

Rachel Althizer is traveling with A-BE-C for the 2023 International Exstrophy Workshop in Ahmedabad, India, as a social worker to assist children and families with exstrophy as they prepare for surgery.

Janet Rankin shares her story of perseverance throughout her life with exstrophy and how the love of her husband saved her life.

A-BE-C recently presented its Richard W. Grady Humanitarian Award to John P. Gearhart, M.D., Johns Hopkins Professor of Pediatrics and Urology. The distinguished award was presented during the 2022 International Exstrophy Conference in Baltimore, MD.

Dr. Canning gave of himself completely in doing his utmost to improve every child’s life that he touched, to the best of his ability. He always put his patients’ care, safety and quality of life first in every conversation and plan of care. The entire BE community will miss his tremendous passion, kindness, availability and great skill. 

“Imagine the feeling of sleeping on a wet bed every night and to wake up very early to clean it and put it on the roof to dry before people wake up.” 

Khadidja’s childhood memories are mostly of struggle. She often leaked urine and kids her age always made fun of her. They criticized her for how she walked, and how her thighs never looked as “normal” as theirs.

Johnson, now a grown up boy, looks so healthy and energetic. He told me, “he feels pretty fine.” He has not had any health complications for some time now. Johnson is still in school and progressing well, currently in primary three.

Treasure is now a joyful three-and-a-half year old and currently has no major health challenges. Although she has not been able to be seen in person in the clinic, A-BE-C has been able to care for her remotely through telemedicine.

Late in the day at a makeshift ‘medical mission’ clinic in the Bahamas as the doors were closing for the day, a family hesitantly knocked on the door. Judging by the looks on their faces, the volunteer nurses knew they were desperate for help. Avles, an adorable five year old boy stood before them – they could smell him before they met him. Alves’ father, Lucner, out of desperation and faith asked if they would see his child, not really expecting they could do anything.

We recently had the rare opportunity to get some words of wisdom from Australian, Tom Flood, who was born in 1930 with bladder exstrophy. In those days, very little was known about bladder exstrophy and no treatment options were available. His parents were told that Tom was not expected to survive and if he was not in pain, just to leave things as are. But Tom had other plans! 

A-BE-C has teamed up with a group of physicians in a coordinated effort to send much needed oxygen concentrators to partner hospitals in major cities in India, to aid in their continued fight against Covid. India is experiencing the world’s worst outbreak, with 400,000 new cases each day.

Dr. Bradley Kropp, of OKC Kids Urology, talks about how the bladder works and why it’s important for bladder exstrophy.

Check out the video from our virtual back to school conference, where we discussed back to school concerns for BE kids and families, talk about Covid related issues, and provide tips for bathroom procedures.

Rosina comparte la historia de su hija, Fátima, también conocida como “Mily”, y su viaje con extrofia cloacal en el Children’s Hospital Los Angeles.

Rosina shares the story of her daughter, Fatima aka “Mily”, and their journey with cloacal exstrophy at Children’s Hospital Los Angeles.

We have been amazed at our ability as humans to pivot as our reality changed.  We have learned about and adapted to this “new normal.” The outpouring of volunteerism that I have seen on our team has been impressive.

Since 2009, a team of surgeons, anesthesiologists, social workers, and other healthcare providers from hospitals in India and the U.S. have worked together to help more children in Asia and Africa receive the complex surgery necessary to address bladder exstrophy.

An article based on a survey conducted in 2019 by Seattle Children’s and A-BE-C regarding adult females with exstrophy and their long-term sexual, reproductive, and urinary outcomes has been published.

Family shares their story and thankfulness for the A-BE-C community and the team at Seattle Children’s.

Sessions from the 2015 conference focused on the medical, social, emotional, and practical aspects of living with exstrophy.

Sessions from the 2016 conference focused on fertility and sexual health for those with bladder exstrophy, research updates, transitional care, how to advocate for school-age children and more.

The very entertaining Paul Kerensa recently hosted a funny, relatable, and encouraging show about his journey with exstrophy. The event was live on Facebook, but you can still view it here. Suitable for all ages!

A-BE-C traveled to Ahmedabad, India for the 12th Annual Operative Workshop on BE. Here is an update on Persis who received closure surgery at the workshop.

Couldn’t make it to the 2019 Conference? Sessions on coping with exstrophy now available!

Four-year-old Khushbakht of Pakistan underwent her first successful bladder exstrophy repair and pelvic osteotomy in Doha, Qatar. Her journey to effective treatment was prompted by a heartfelt plea from her father to A-BE-C, which lead to worldwide support.

Over the past 3 years A-BE-C has helped facilitate surgeries for children with bladder exstrophy in Uganda, and trained Ugandan…

          You may remember a survey conducted earlier this year by Seattle Children’s and A-BE-C regarding…

Your gift today will allow us to invest in our Uganda Initiative, which means more lives healed, more lives restored, more lives saved. More children reaching their greatest life purpose and potential.

A-BE-C Advocates for Bladder Exstrophy Awareness and Education The Urology Care Foundation leads a coalition of 30 patient and physician advocacy…

Briten Douglas is this year’s recipient of the Courage to Shine award, setting an example with her perseverance and positive attitude…

The 2019 International Exstrophy Conference was a huge success, mostly due to the dedication and planning of the team at…

The 11th annual workshop in Ahmedabad, India Was a resounding success thanks to a dedicated international collaboration of medical experts.…

A-BE-C recently elected Dr. Paul Merguerian to a two year term as Advisory Board Chair. Our board helps to shape and guide the strategy of the organization and is vital to the success of our mission: To make the highest standards of treatment, care and support within reach of all people affected by bladder exstrophy.

Participants and supporters at the 3-on-3 Basketball Tournament hosted by the Texas Bladder Exstrophy Group The 3rd Annual BE Extraordinary…

A-BE-C is excited to announce the addition of  Ann & Robert H. Lurie Children’s Hospital of Chicago to its prestigious list…

  A-BE-C is excited to announce the addition of Dr. Evalynn Vasquez and Misty Blue Foster to its Advisory Board.…

Our Faces of BE book, a photo book showcasing individuals with exstrophy from around the world, is now available for…

2019 International Exstrophy Conference June 28-30, 2019 at Children’s Hospital Los Angeles Los Angeles, California, USA Visit the conference page…

Developing a Program for Transference of Complex Surgical Reconstructive Skills

The Boy with the Tiny Belly Button is a wonderful animated film for all children born with bladder exstrophy.

Thank you! The generosity demonstrated by you, the A-BE-C community is overwhelming. You made #GivingTuesday count for bladder exstrophy in…

The Uganda Initiative is launching as part of A-BE-C’s work in global care for bladder exstrophy. See how–together–we’re already making…

Dr. Tony Khoury Chief of Pediatric Urology at both Children’s Hospital of Orange County (CHOC) Children’s Urology Center and the University…

Understanding the facts about the risks of bladder cancer and how to reduce them are important topics for bladder exstrophy…

When a child in the US is born with bladder exstrophy, it can be both shocking and devastating. With ultrasound…

People with bladder exstrophy are at greater risk for developing urinary tract infections. (UTIs). As part of Bladder Health Month, Dr.…

Ibriham was born with bladder exstrophy in northern Uganda. The condition was unfamiliar to local health workers. Though there was…

My story with exstrophy begins in a small country located in eastern Africa called Uganda. Uganda is commonly referred to as…

Researchers at Seattle Children’s Hospital in collaboration with Association for the Bladder Exstrophy Community (A-BE-C) recently published results of a…

The quality of life for Ugandan bladder exstrophy patient Johnson (Ndyabagye) continues to improve since receiving his first surgery more…

A team from A-BE-C, including Executive Director Pamela Block and Board Member Janet Gibson visited several bladder exstrophy patients living…

Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book…

As a bladder exstrophy patient and Master of Public Health candidate, Misty Blue Foster sees exstrophy from both sides of…

The Association for the Bladder Exstrophy Community (A-BE-C) wants to shorten the time it takes families to find complete and…

Tommy Ludlow, the young recipient of the this year’s Courage to Shine award is already inspiring others to turn challenge…

At the 2016 International Exstrophy Conference, several young attendees shared their insight and expertise about living with bladder exstrophy. Take a moment to enjoy and absorb their valuable words and wisdom!

A handful of teens with bladder exstrophy were recently recruited to try out a new kind of event: a camping…

Congratulations and big thank you to all involved in this year’s BE Extraordinary 3-on-3 Basketball Tournament!  A special thanks to Brandi…

A conference for the whole family! 6pm Thursday, June 7 – 4pm Saturday, June 9   “Whole Health” is the theme…

With every bladder exstrophy patient there is a story of resilience and hope.  A new chapter of young Ugandan Ndyabagye…

Those who knew the late Dr. Richard W. Grady understand his unwavering commitment to children and families affected by bladder…

Approximately 110 children with bladder exstrophy receive life-changing treatment and care at the international eight day event Safe, affordable and…

Get the Facts, Get Diagnosed and Take Control of Your Bladder Health! A-BE-C is a proud member of the Bladder…

A-BE-C’s growing library of webinars and presentations on bladder exstrophy is now available through a new subscription program. Become a…

Laparoscopic pediatric urologist Dr. Zhou Huixia (周辉霞) highlights gaps in bladder exstrophy care that exist across China, and her plans…

Professor Wei Cheng recalls the path that led to the discovery of the gene and mechanism responsible for bladder exstrophy…

We are pleased to announce that Janet Gibson and Joseph B. Redman have joined as the newest members of Association…

Dr. Richard Grady saw medicine as part science, part art. It was the cornerstone of his medical practice and his extensive…

The pediatric urology team at Johns Hopkins is looking for bladder exstrophy patients to participate in a clinical trial. Participants…

In 2015, a small group of three families came together to found the Texas Bladder Exstrophy Group. We are an…

Among the nearly 100 children who received checkups and medical procedures for bladder exstrophy at the operative workshop in India in…

The 9th annual Operative Workshop on Exstrophy and Epispadias Complex got underway just after the first of the year in Ahmedabad, India.…

At seven, Johnson (Ndyabagye) is old enough to understand that his body is different from those of his two brothers.…

The children receiving care in India are grateful for more than just treatment for their bladder exstrophy. They are also the proud…

We are pleased to announce that three mental health providers have joined the advisory board of the Association for the…

This is an exciting time for A-BE-C’s Global Care Initiative! Read the full announcement about the Annette’s and Sabyr’s surgeries at Sidra Medical…

Executive Director Pamela Block was invited to represent the Association for the Bladder Exstrophy Community at the 2016 Bladder Health…

Sabyr’s family hopes that one day their son will be able to sit up on his own and maybe, if…

When seventeen-month-old Annette was first born with bladder exstrophy, her mother assumed her condition was fatal. “I did not understand…

Dr. Gearhart provides details about what makes a successful primary exstrophy closure, why some closures fail, how to prevent failed closures, the types of failures and the treatment of failed closures. 

Dr. Paul Merguerian discusses the management and long term outcomes of children with bladder exstrophy and epispadias, the initial management of pelvic osteotomies, and the goals of long-term management.

Catheritization or “cathing” is a fact of life for many bladder exstrophy patients. The topic triggers many questions and concerns…

“…a five-year-old abandoned Ugandan girl, born with her bladder outside her body, will undergo surgery with the help of funds…

[lead]You can help bladder exstrophy patient Mick Hullinger fund surgeries for other children around the world with bladder exstrophy by making…

Dr. Heiko Reutter is a world renown researcher in the field of pediatrics and human genetics. In this webinar Dr. Reutter will share his research and insights on the discovery of a genetic mutation associated with bladder exstrophy.

MLB agent Joshua Kusnick courageously shares his journey living with bladder exstrophy in a profile by former Sports Illustrated reporter…

In this two-part webinar, Dr. Marlo Eldridge shares her deep experience and expertise and offers specific tips and insights to parents and providers.

Dr. William Reiner, Child and Adolescent Psychiatry, Urology at OKC Kids Urology, provides an excellent overview of bladder exstrophy in…

A groundbreaking intensive workshop in the treatment of bladder exstrophy-epispadias complex for pediatric urologists and surgeons is taking place in Ahmedabad, Gujarat, India on January 16-18. Many of A-BE-C’s Medical Advisory Board members will be on-site faculty and A-BE-C’s Executive Director, Pamela Block, will be on hand providing support to families.