We are excited to announce the formation of the A-BE-C Adult Patient Advisory Council (APAC). Established in March of 2024, this council was created to serve as a vital link between our organization and the adult patient community.
Adult Provider Network – One of the biggest needs of adult patients is to find a qualified healthcare provider who is familiar with the complexities of bladder exstrophy. We are working on a database of adult providers across the US, and will make it available on the ABEC website ASAP. Until then, you can reach out to us at: patient@bladderexstrophy.com.
Guides for Post-Pediatric Management of Bladder Exstrophy – Transitioning your care can be difficult for people with many different types of chronic conditions. We are developing more comprehensive resources to help patients transition to adult healthcare providers. While these are in progress, you may find the following resources to be helpful: www.GotTransition.org
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Bladder Exstrophy Research Summaries – Most research related to bladder exstrophy is written in a very technical manner, and we are working to improve the accessibility of this information. Many providers are actively researching bladder exstrophy (causes, management techniques, patient quality of life), and we are working with them to increase patient involvement.
Advocate for Bladder Exstrophy Care – Bladder exstrophy is not a federally recognized disability in the US. ABEC and the APAC are working with organizations like the American Urological Association and other advocacy groups to improve healthcare policymaking and awareness.
Meet the Council!
Adult Provider Network Chair
Kimberly Allen
Research & Community Network Chair
Thomas Vincent
Communications Chair
Gery L. Deer
Adult Provider Network Chair
Kimberly Allen
I was born in rural Washington state, and I’m grateful to have received fantastic surgical care and management of my classic bladder exstrophy at UW Medicine Urology. I live in Seattle and love gravel biking, skiing, hiking, and paddling.
I have a degree in Neuroscience from the University of Rochester in New York, and my career has centered on organ and marrow transplantation, leading national teams to grow the donor registry and create digital strategies to improve patient experience. I also serve on several patient experience councils at UW Medicine–the same healthcare system where I had all my surgeries.
In November 2022, I discovered A-BE-C and volunteered to help build an adult patient advocacy program. Adult patients sometimes feel lost after leaving the pediatric setting, and we often have trouble finding urology providers who will treat us. Now, I volunteer alongside some incredible patient colleagues as we build tools and resources that help patients find adult providers and support the healthcare transition from pediatric to adult. I’m excited to learn what our patient community needs, and I’m committed to moving these projects forward.
Research & Community Network Chair
Thomas Vincent
Thomas Vincent was born in 1996 with bladder exstrophy at Boston Children’s Hospital. Growing up, he attended frequent exstrophy support group meetings at the hospital and eventually began volunteering as a patient advocate in both Massachusetts as well as Washington D.C. He enjoys engaging with the exstrophy community as a counselor at Youth Rally and through A-BE-C as a member of the patient advisory council.
Currently, Thomas is a graduate student in the Department of Bioengineering at the University of Washington where he is researching kidney disease and regenerative medicine. He hopes to leverage his scientific expertise and personal experiences to help bring new innovative medicines to clinics where they can improve patients’ quality of life. When he is not in the lab, he enjoys playing soccer in the local adult recreational leagues and backpacking in the PNW with his partner, Sarah, and Bernese Mountain Dog, Cali.
Communications Chair
Gery L. Deer
Hi, I’m Gery Deer and I’m from Jamestown, Ohio. I was born in Dayton in 1967 and, like so many of those likely reading this, I’m a bladder exstrophy patient. Growing up on my family’s cattle farm, I had a pretty normal life. I participated in 4-H, worked livestock, learned computers, went to college for engineering, and today I’m a professional writer.
Now in my late 50s, at the age of 49 I became an endurance tour cyclist and participate regularly in 100-mile bike events around the Midwest. I’ve never felt like I have a “condition.” I was just me. After all, I didn’t know any other way to be. That said, I’ve still worked hard to try to keep myself as healthy as possible.
A couple of years ago, my urologist announced his retirement. I’d been with him for more than 25 years and suddenly found myself without specialized care. Shortly after, I discovered A BE C, reached out, and eventually found a new doctor at Cleveland Clinic. Since then, I’ve been happy to learn I’m not the only Kryptonian on the planet Earth, and all was well with the world.
I also had the good fortune to meet Kimberly and Thomas, who were kind enough to invite me to be part of the fledgling patient advocacy group. It’s been an educational and rewarding experience I’d like to be able to offer other adult BE patients. As the organization grows, we hope to provide as many resources possible to our fellow patients.
We are seeking insight from adult patients, parent populations, and healthcare providers. We use small focus groups and broader email surveys to help us understand our adult community’s needs more thoroughly. Become involved by signing up for the ABEC newsletter and opt-in to engage with the APAC : https://www.bladderexstrophy.com/subscriptions/
In addition to our founding chairs, we’d also like to recognize the contributions of Rachel Althizer, David Hlebain, and Jada Sheeler as instrumental voices in helping to establish the council.
If you’d like to participate in the Adult Patient Advisory Council, please use the form below to send us a message. Someone will get back to you as soon as possible.
