March 15, 2018
Those who knew the late Dr. Richard W. Grady understand his unwavering commitment to children and families affected by bladder exstrophy. His global humanitarian work helped to elevate the standards of care for children born with this rare medical condition, and continues to improve the lives of families who have mostly been ignored and marginalized […]
July 25, 2017
Laparoscopic pediatric urologist Dr. Zhou Huixia (周辉霞) highlights gaps in bladder exstrophy care that exist across China, and her plans to designate People’s Liberation Army General Hospital, Beijing as a regional center of excellence for exstrophy surgery. (Left) Dr. Zhou Huixia with Dr. Rakesh Joshi at the Operative Workshop on Exstrophy in Ahmedabad, India (Right) […]
July 18, 2017
Professor Wei Cheng recalls the path that led to the discovery of the gene and mechanism responsible for bladder exstrophy in humans During a recent conversation with the Association for the Bladder Exstrophy Community, Dr. Wei Cheng (郑伟) recounted his chance encounter with bladder malformation in a mouse. This encounter ultimately led an international research team […]
January 14, 2017
Among the nearly 100 children who received checkups and medical procedures for bladder exstrophy at the operative workshop in India in January 2017, more than a dozen were undergoing complex corrective surgeries. For those children and their families, surgery marks the beginning of a lengthy post-surgery recovery process. Parents learning wound and pin care This year, […]
January 12, 2017
The 9th annual Operative Workshop on Exstrophy and Epispadias Complex got underway just after the first of the year in Ahmedabad, India. Nearly 100 exstrophy patients received treatment from an international team of experts. Patients and their families made journeys from all over India to the Main Civil Hospital for surgery, check-ups and other procedures. Several other doctors […]
November 28, 2016
At seven, Johnson (Ndyabagye) is old enough to understand that his body is different from those of his two brothers. He is old enough to understand that he cannot use the toilet like other children his age. And he realizes that he will not find relief from his constant physical pain until he receives surgery […]
November 15, 2016
The children receiving care in India are grateful for more than just treatment for their bladder exstrophy. They are also the proud owners of their very own “hobo-bags.” Each has been thoughtfully made and filled by A-BE-C super-volunteer Dawna Boudot, a 17-year old from Ohio. “The hobo bags are a huge hit in the ward today,” reports Pamela Block, A-BE-C’s executive […]
October 24, 2016
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 and Research Center in Qatar that are a result of an international collaboration between A-BE-C and Qatar Foundation for Education, Science and Development. Both surgeries were performed by Dr. Pippi Salle, with the support of […]
October 11, 2016
Sabyr’s family hopes that one day their son will be able to sit up on his own and maybe, if he is lucky, he will even walk. But for now, the family is looking forward to October 19th, when the 19 month old from Central Asia will travel to Sidra Medical and Research Center and Hamad […]
September 29, 2016
When seventeen-month-old Annette was first born with bladder exstrophy, her mother assumed her condition was fatal. “I did not understand the whole situation,” she says. “I had not seen or heard about this condition before, so I thought I would lose my baby.” It was not until Annette was transferred from her local hospital in […]