Magical.

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.

After months of late-night planning calls, eighteen passionate volunteers gathered in Entebbe for what would become the largest exstrophy workshop ever held on the African continent.

From the moment we came together—pediatric urologists, surgeons, anesthesiologists, specialty nurses, mental health professionals, music therapists, patient advocates, and medical interns—there was a unique synergy. We melded seamlessly with the incredible Ugandan medical team, as if we had worked together for years. It truly was magical.

Stories of Hope & Healing

Over two weeks, we met families who traveled days—some from South Sudan and Burundi—hoping for life-changing surgeries. Fifty-seven patients, ranging from those we’ve followed for years to those we met for the first time, brought stories of resilience and hope.

Despite logistical challenges and the realities of limited resources, every day brought moments that reminded us why this work matters.

Building Community

We weren’t just providing medical care; we were building community. Parents exchanged stories and advice while support groups and therapy sessions offered emotional healing. On Family Day, over 100 people gathered, speaking seven different languages, united by a shared mission.

The outcomes of this workshop are still unfolding. While we’re home now, many patients remain in the hospital, recovering from major surgeries. The challenges aren’t over. Families spread across remote areas face treacherous roads, and the lack of phones makes follow-up care difficult.

Reality in Uganda

This beautiful family is struggling after they were abandoned by their father because of the youngest child being born with exstrophy. Despite their struggles, they welcomed us into their home to see firsthand what living with exstrophy looks like in an impoverished community.

This is where you come in.

Your support helps us overcome these challenges. It allows us to partner with local nonprofits to provide ongoing care, send messages between villages, and ensure families have transportation to follow-up appointments. Every dollar you give creates opportunities for life-changing surgeries, education sessions, and the kind of magic that happens when people come together to create hope.

Let’s keep the magic alive. Your generosity ensures that no family has to journey alone and no child is left without the care they deserve

Please consider making a donation today to help us continue this vital work. Together, we can make sure every child we meet has a future full of possibility.

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. The distinguished award was presented during the 2024 International Exstrophy Conference in Milwaukee, WI, by Pamela Artigas, A-BE-C’s Executive Director. The award honors those who have elevated the standards of care for children born with the rare medical condition of bladder exstrophy. Dr. Salle, a world-renowned pediatric urologist, has traveled to more than 40 countries, treating bladder exstrophy patients and sharing his knowledge with other pediatric surgeons. 

About Dr. Joao Luiz Pippi Salle, MD, PhD, FAAP, FRCPSC

Joao Luiz Pippi Salle MD, PhD, FAAP, FRCPSC is a Professor at the Division of Urology, SickKids Hospital and Co- Director of the Center for Pelvic Reconstruction. He was the former Chief of Urology of the Montreal Children’s Hospital, Toronto Sick Kids Hospital in Canada and Sidra Medicine in Doha, Qatar. Dr. Salle is a pediatric urologist with special interest in genito-urinary reconstruction. 

He is an innovative surgeon who developed new techniques for the correction of urinary incontinence, disorders of sex development, hypospadias, exstrophy/epispadias complex and UPJ obstruction. He has published 180 papers in peer reviewed journals and 55 book chapters. He was a visiting professor in 40 countries and associated editor of the textbook Clinical Pediatric Urology, one of the most prestigious in the specialty. He is an accomplished teacher having received several teaching awards at University of Toronto and McGill University, in Canada. He was the inaugural Women’s Auxiliary Chair of Urology at Sick Kids Hospital in Toronto and is proud of having trained many of the world leading pediatric urologists. In 2019 he received the Life Achievement Award by the World Federation of Pediatric Surgeons (WOFAPS) in recognition for his academic contributions to pediatric urology worldwide.

Dr. Salle is part of the US-India Bladder Exstrophy Collaborative which commenced in 2009 as a consortium bringing together leading U.S. and Canada based children’s hospitals partnering with one of the largest public hospitals in Asia to provide medical services at Civil Hospital-Ahmedabad, India. Patients from the region with BEEC receive the full spectrum of care with international and Indian surgeons during this workshop and provided education, peer support, and advocacy interventions in addition to their surgical or medical interventions. In addition, Dr. Salle serves on A-BE-C’s esteemed medical advisory board, consulting with physicians and patients worldwide. When asked what drives him, Dr. Salle affectionally answered, “It’s the patients and their families. Receiving this award from them, is the most special.” 

About the Richard W. Grady Humanitarian Award

Named for the late Dr. Richard W. Grady of Seattle Children’s, an internationally known expert and humanitarian known for inspiring and leading initiatives to reduce world suffering related to the condition of bladder exstrophy, the Richard W. Grady Humanitarian Award is given to recognize the work of others with this same spirit. The award, established in 2018, honors individuals for their outstanding humanitarian and volunteer work to improve the health of those affected by bladder exstrophy. Award recipients are individuals who exemplify the highest value of leadership, excellence in clinical care and research, innovation, teaching, volunteerism, advocacy, and dedication to improving the health of those living with bladder exstrophy around the world. 

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.

Families Around the World Need Your Help.

The Power of Community

Caring for exstrophy alone can feel overwhelming, even isolating, but we are here to change that. Our goal is to build a supportive network where families no longer feel alone but instead are strengthened by a community that understands their journey.

Education and Advocacy

Families attending the Uganda Family Day will receive education on exstrophy, self-advocacy, and how to nurture independence for themselves and their loved ones. Knowledge is key in overcoming challenges, and we aim to equip every participant with the tools they need.

Family Stories

Local families will share their experiences, offering encouragement and inspiration. These shared stories will help empower families to face the future with confidence and hope.

Art and Music Therapy

Creative therapy will be offered to build strong bonds and a sense of belonging among patients and their families. Music and art not only provide healing but also foster community connections that last.

How You Can Help

We need your help to make this day a success. Your donation will provide:

1. Transportation for families to attend the event.
2. Access to Healthcare with international expert pediatric urologists, orthopedic surgeons, and nurses available to see all patients in the clinic.
3. Nutritious Meals to ensure that every participant enjoys a healthy breakfast and lunch.
4. Art Supplies for art therapy, enabling creative expression and therapeutic healing.

How Much?

Each family needs $250 to attend this life-changing day, and with over 50 families expected to join, we aim to raise $12,500. Every contribution, no matter how small, will help us move closer to building a thriving, connected BE community in Sub-Saharan Africa.

Together, we can strengthen this community. Will you help us?

With your support, we can create a lasting impact, empowering families to face BE with confidence and care, and ultimately transforming lives. Let’s build this community—one family at a time.

Rachel Althizer, 32, received the 2024 Courage to Shine award at the International Conference in Milwaukee, WI. Born in the small town of New Burn, North Carolina in 1992, her medical journey began with an emergency ambulance ride to a larger hospital immediately after birth.

She underwent immediate closure, reclosure, bladder neck reconstruction, and an osteotomy. At age four, she developed blockages in her ureters. Her parents, especially her mother, researched doctors across the U.S., leading them to Dr. Gearhart at Johns Hopkins. 

When Rachel was four years old, she had major surgery to create a neobladder using her intestines and a mitrofanoff using her appendix. Since then, Rachel has been healthy and fully continent, with only a few procedures and surgeries.

After a childhood filled with competitive soccer, school, and typical teenage drama, Rachel earned a bachelor’s degree in psychology and a master’s degree in social work. She and her husband have been married since 2020 and live in her hometown, close to parents, siblings, nieces and nephews. 

A Passion For Helping Others

Throughout her life, Rachel developed a passion for helping and connecting with others. In 2023 and 2024, Rachel was invited to participate in the International Bladder Exstrophy Collaborative Workshop in India. “The doctors, nurses, Pamela, and everyone involved in the workshop make a significant difference in every single patient’s life, from life-changing surgeries to simply taking the time to explain bladder exstrophy,” Rachel says. “I hope my presence in India provides hope to parents and patients that they can lead fulfilling lives despite being born with bladder exstrophy.”

Rachel also serves on the Bladder Exstrophy Patient Advisory Board, which aims to connect and provide resources for adult BE patients. “I’m dedicated to serving the Bladder Exstrophy community that supported my family and me so much during my childhood and continues to do so today.” Rachel shares, “I’m honored to be part of this community and look forward to connecting with more patients and families.”

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 (Dr. Ran Mathews & Dr. Anthony Schaeffer), nurses (Marlo Eldridge, Holly Shimomura & Alexa Penton), a social worker (Emily Haddad), and patient advocates (Janet Gibson & Noelani Shimomura) who traveled to Uganda to teach and train local Ugandan medical professionals in the care of bladder exstrophy. Patients who had previous surgeries came for follow-up care and others for surgeries, including two primary closures and consultations to discuss future surgeries.

A few highlights from the trip: 

Seeing Balam, a 23-year-old young man who had his first surgery in February, 2023. Balam grew up in a remote village in eastern Uganda where he rarely left his home. Prior to surgery, he was quiet, reserved and uncommunicative, but as he shared, “I now have the freedom to leave my home and do what I want to do. I want to be a teacher, a preacher and a mechanic and now I believe I can do all of those things.” 

Balam’s confidence and his smile are a reminder of the importance of the work being done to better the care of those living with bladder exstrophy in Uganda and around the world. 

Visiting BE Patients in Their Villages

Forests, sugar cane fields and many dirt roads led to the homes of Rachael and Collins, where the team was welcomed with big smiles and lots of hugs.

A-BE-C recently presented its Richard W. Grady Humanitarian Award to Dr. William Reiner, Child and Adolescent Psychiatry, Urology. The distinguished award was presented during the 2023 International Exstrophy Conference in Seattle, WA, by Dr. Paul Merguerian. The award honors those who have elevated the standards of care for children born with the rare medical condition of bladder exstrophy. Dr Reiner, a world-renowned Child and Adolescent Psychiatrist, spent his career focused on the psychological aspects of bladder exstrophy. 

About Dr. William Reiner

For nearly 50 years, Dr. Reiner has specialized in research and care of the developmental aspects of children and adolescents with bladder exstrophy and those intersex conditions. He has worked with over 600 bladder exstrophy patients in research and clinical care. 

Dr. Reiner trained in Adult and Pediatric Urology at the Johns Hopkins Hospital, working with children, adolescents, and adults with bladder exstrophy and other complex urological birth anomalies beginning in 1976. He also trained in Psychiatry and Child and Adolescent Psychiatry at the Johns Hopkins Hospital, again working with exstrophy patients. Dr. Reiner was on the faculty at the Johns Hopkins Hospital full-time until 2003 and then moved to part-time until retiring in 2016. From 2003 to 2016, he also was on the faculty at the University of Oklahoma Health Sciences Center as a full professor, retiring in 2016 as a Professor Emeritus. He has authored numerous research articles and textbook chapters and led dozens of group panels with teens and young adults, discussing issues they struggle with while growing up, such as gym, sports, dating and privacy issues. Dr. Reiner now consults with physicians treating bladder exstrophy and patients and their parents and serves on the A-BE-C Advisory Board.  

Known for his infectious smile and warm hugs, Dr. Reiner is always surrounded by the children and adults he has helped. When asked to summarize his career, he shared, “By far, the favorite part of my job has been volunteering with A-BE-C at the annual meetings,” which he has done for over 25 years. 

About the Richard W. Grady Humanitarian Award

Named for the late Dr. Richard W. Grady of Seattle Children’s, an internationally known expert and humanitarian known for inspiring and leading initiatives to reduce world suffering related to the condition of bladder exstrophy, the Richard W. Grady Humanitarian Award is given to recognize the work of others with this same spirit. The award, established in 2018, honors individuals for their outstanding humanitarian and volunteer work to improve the health of those affected by bladder exstrophy. Award recipients are individuals who exemplify the highest value of leadership, excellence in clinical care and research, innovation, teaching, volunteerism, advocacy, and dedication to improving the health of those living with bladder exstrophy around the world. 

Written by Cassandra Strunk

“There were some abnormal findings in your ultrasound that we’d like to discuss with you…” 

“…low insertion of umbilical cord, poor visibility of genitalia, and absence of urine filling the bladder.” 

“I want to refer you to an MFM clinic for further diagnosis.” 

These were the statements presented to us after our 20-week ultrasound. Like many people, my husband and I had never heard of Bladder Exstrophy, so the interpretation of these findings was completely foreign. As we waited for a second ultrasound appointment at a local children’s hospital, I admittingly did what you’re not supposed to do… I turned to Google. After hours of searching and typing in various word combinations that described our ultrasound findings, it led me to some free journals and a textbook on pathologies of the urinary system; in a free chapter of the textbook, I found the definition of “Bladder Exstrophy”. While my husband and I still had hope that everything could turn out “normal”, I’ll never forget the feeling in my gut when I found the definition of BE. That said, I had an odd sense of confidence, feeling that we needed to be prepared to hear that our son would be diagnosed with Bladder Exstrophy. I truly believe that finding the definition of BE prior to our next appointment and the “gut feeling” to be prepared was God’s hand at work– a testimony of God’s guidance to prepare us for what was to come. 

Navigating the Unknown

The second ultrasound found the same findings as the first, and with it came a confirmed diagnosis: Bladder Exstrophy. Not even a minute after receiving the diagnosis, we were pointed in a direction we never thought we’d ever have to navigate: the option to terminate the pregnancy. We were told, “We completely understand if this diagnosis is too much for you, and we support you if you decide to terminate the pregnancy.” Time felt like it stopped as I pondered many ways to answer this doctor, but I do remember my answer being terse, saying that termination was not an option for us. No patient education, no resources to learn about bladder exstrophy, and no referral to specialists were given to us. Instead, the support to terminate was brought up multiple times, speaking of the challenges and the “psychosocial” obstacles our son would face. Their medical staff set the tone–full of devastation and sadness–making me question that maybe there was something terribly wrong. Every medical professional we met kept repeating “I’m so sorry.” A nurse handed me tissues even though I wasn’t crying, and she even asked “do you feel him kicking” with a tone as if I shouldn’t be able to feel him. The answer was yes, I could feel him moving… a lot. My husband and I were instructed to sit next to each other so we could “comfort each other during this time,” when all we wanted to know was the next steps in my pregnancy care and birthing plan. It was only after I asked, “Can I still give birth to a healthy baby,” did their tone change to say, “Oh yes, you and your baby are otherwise completely healthy.”

It is no wonder that many parents are left with confusion and devastation when patient education is lacking and no resources are given to provide hope in knowing that the care to achieve a thriving and optimal life with BE does exist! At that moment, I knew we would be taking things into our own hands, and it was up to us to go out and learn about BE. Thankfully, after coming across the A-BE-C website, we were able to educate ourselves, self-advocate, self-refer ourselves to Seattle Children’s Hospital, and we never looked back. Xander was going to get a chance to receive the best care in the Pacific Northwest.

A Healthy, Strong Baby Boy

Fast forward to today, our baby Xander is one-year post-op complete bladder repair. Xander is our definition of “joy,” bringing smiles, light, and strength to everyone around him. His constant laughter and happiness make it seem like nothing in his life has ever caused him pain. That odd sense of confidence that overcame me as I was preparing for the diagnosis, became an overwhelming confidence once Xander was born; it is the confidence in knowing we were made for Xander and Xander for us. Psalm 139:14 resonates in our hearts; Xander deserves to live out his full purpose in this world. He blesses us each day as a growing, sweet boy, continuing to thrive and shine amidst his condition. We can’t wait to see what mighty things the future has in store for our strong baby boy. 

Like many of yours, our story is one of Acceptance of his 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. Dr. Nimako lives in Ghana but has spent many years training in Cape Town South Africa, Nationwide Children’s Hospital, Kampala Uganda and was sponsored twice to come to India and train alongside world renowned pediatric urologists. Both years, he not only came for training, but he brought two of his most complex exstrophy patients with him. 

First Meeting

I first met Dr. Nimako in 2020 when he reached out to A-BE-C to see if we could help a little girl named Blessing, who at the age of four had her first bladder surgery in India. She is back in Ghana now and Dr. Nimako, in partnership with the US bladder exstrophy collaborative, has been caring for her. In time, she will need another surgery, but she is now in school and doing well! 

I was so impressed with his ongoing commitment to caring for complex children being one of a few pediatric surgeons in Ghana. We invited him again in 2023 to bring a child to India that he had been taking care of for several years. When I asked what drove him to work long hours and travel the country to look after these kids, he simply said, “I am committed to giving these kids and their families an opportunity to integrate socially in the community. I also want to improve their quality of life.” 

A Fierce Advocate

Dr. Boateng’s commitment is evident. He once again advocated for a little boy named Jaafar, who was born in 2013. We learned about Jaafar when Dr. Nimako consulted the US surgical team about a serious infection Jaafar developed after being treated at another hospital. Dr. Nimako spent months treating the infection to prepare him for surgery in India. Jaafar’s mom, Asmau, shared with me that until she found A-BE-C and was referred to Dr. Nimako, she felt hopeless. His two previous failed surgeries had destroyed his bladder and his spirit, and he spent many months in severe pain. Dr. Nimako, eager to learn more about treating bladder exstrophy, joined A-BE-C at Uro Care in Uganda for another week of training. It would be another two months of recovery at Civil Hospital in India before Jaafar was well enough to fly back to Ghana. Instead of returning home, he was immediately admitted to the hospital and once again under the committed care Dr. Nimako. 

“The sharing of knowledge of all participants in the care of the kids with bladder exstrophy provides the opportunity to learn from the experience of other surgeons. I also like the complete primary repair approach to bladder exstrophy because it is the most viable option for the Ghanaian kids.”  – Dr. Nimako

I am confident that we will continue to partner with Dr. Nimako so that more children in Ghana will receive quality care and treatment for bladder exstrophy.