Adult Patient Advisory Council

Adult Provider Network Chair

Kimberly Allen

Hello, I’m Kim Allen. I was born in the rural Skagit Valley in Washington state, and I’m grateful to have received fantastic surgical care and management of my classic BE at UW Medicine Urology. I now live in Seattle and love gravel biking, hiking and water sports, having competed in local and national rowing and paddling races including the Head of the Charles in Boston. I also have an identical twin, unaffected by exstrophy.

I received a degree in degree in Neuroscience from the University of Rochester in New York, she returned to Seattle and began her healthcare career in organ and bone marrow transplants. I’ve spent the majority of my career leading national teams to expand the Be The Match marrow donor registry, and created digital strategies to improve patient experience and grow community engagement. I began volunteering for A-BE-C in March, and lead the development of our patient advisory council. I spend my free time cycling, backpacking and sea kayaking along the Washington coast.

I’ve centered my career on healthcare strategy, operations and community engagement in transplant medicine, with a special interest in improving patient experience through digital health and technology. I serve on three patient experience councils at UW Medicine, the same healthcare system where I had all my surgeries.

In 2022 I discovered A-BE-C, and asked if I could volunteer to help build an advocacy program to support adult BE patients. I am excited to work alongside some incredible patient colleagues as we solve challenges like building tools to support the transition from pediatric to adult care, and develop resources that close the gap for BE adults who have felt lost after leaving the pediatric setting. I am truly excited to learn more about what our community needs, and am 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 & Public Affairs 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.