Adult Patient Advisory Council

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 kayaking.

I have a degree in Neuroscience from the University of Rochester in New York, and my career has centered on patient advocacy and expanding bone marrow transplantation, leading national teams to grow the donor registry and create digital strategies that 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 create support systems for adults with exstrophy. Patients sometimes feel lost after leaving the pediatric setting, and we often have difficulty finding urology providers who will treat us. Now I volunteer alongside some incredible patient colleagues as we build tools that help patients find adult urologists, and resources that support the healthcare transition from pediatric care to adult care. Through our APAC focus groups, we’re learning about the needs of adult patients, and I’m excited to develop projects that address those priorities.

Research & Community Network Chair

Thomas Vincent

Thomas Vincent was born in 1996 with bladder exstrophy and received all his initial urology care 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 everyday life. I participated in 4-H, worked with livestock, learned about computers, attended college for engineering, and today I’m a professional writer.

Now, in my late 50s, I have become 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 maintain my health as much 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 the 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 join their fledgling patient advocacy group. It’s been an educational and rewarding experience that I’d like to offer to other adult BE patients. As the organization grows, we hope to provide as many resources as possible to our fellow patients.

Alexander Lavertu

I was born in Boston, Massachusetts in 2001 with bladder exstrophy and have received urological care at Boston Children’s Hospital for my entire life. I feel incredibly fortunate for the support I’ve had and the friends I’ve made along the way—many of whom I keep in touch with today. 

I grew up in Saco, Maine until I was 11, then moved to Aurora, Colorado, where I lived until attending Colorado State University in Fort Collins. After graduating with a Bachelor of Science in Business Administration, concentrating in Computer Information Systems, I moved to Clifton Park, New York to be closer to family and to live with my girlfriend. 

Some of my favorite hobbies include running, lifting, hiking, hockey, lacrosse, PC building, website development, and spending time with friends. I’ve never let my condition limit what I can do, and one of the most impactful decisions I made was undergoing surgery to begin intermittent catheterization—something that has greatly improved my quality of life. 

I’m new to the ABEC team and excited to combine my lived experience with my technical skills to help foster community, promote awareness, and support others living with bladder exstrophy. 

George Hunt III

My name is George Hunt III and I was born with classic BE, exstrophy-epispadias as well as pelvic separation on an Air Force Base in Altus, Oklahoma in 1977.  First born to George Jr and Lois of Brook Park, Ohio.  I have five siblings.  All of whom still reside near the Cleveland, Ohio area. 

Currently, St Charles, IL is where I make my home, with my wife (Christine) of 25 years and four children.  My wife is my world.  I simply would be nothing without her.  My children are gifts from God.  Absolute treasures.  The culmination of the love shared with my beautiful wife.  Our legacy. 

Sports, Cigars, Politics, Fashion and Scotch.  Not necessarily in that particular order.  These are my hobbies.  Some would call them vices.  All of which keep me going, make me smile and allow me to enjoy the fruits of our labor.  Currently I am the Vice President of a master importer wholesaler of industrial fasteners, MRO/OEM commodities and personal protective equipment (PPE).  I love my job.  I have been employed with the same company for over twenty-seven years.  I am proud of the accomplishments made and humbled with the career I have forged. 

Bladder Exstrophy is now an event, which happened within my life.  I treat the defect as part of who I am.  I do not let the defect treat me.  I am so looking forward to giving back to the bladder exstrophy community.  Together we will be amazing and do great things. 

….. one day you will overcome what you’re going through now and it will become part of someone else’s survival guide. “ 

Krista Geesaman

I was born with bladder exstrophy in 1989 in Colorado Springs, CO. Growing up, I just wanted to be a normal, healthy kid and tried my best to hide my condition. As I transitioned from a career in paleontology to the medical field, I came to understand that my personal health journey could be a powerful resource to help others. 

During my childhood, I underwent my first surgery at Colorado Children’s Hospital in Denver, CO, followed by several more major surgeries at Lurie Children’s Hospital of Chicago. Throughout my life, I moved across the country, living in eight different cities across multiple states. Finding competent providers was a constant challenge. In smaller cities, many urologists admitted they could only manage typical UTIs. When more severe issues arose in my 30s while living in West Texas, I was forced to seek care out of state, which only highlighted the frustration of limited access to knowledgeable care. 

Now, working in the medical field, I hope to leverage my experiences to support others facing similar challenges. By joining the Adult Patient Advisory Council, I aim to reduce the stress and uncertainty of finding knowledgeable providers and advocate for improved healthcare accessibility for bladder exstrophy patients. 

Faith Nieber

My name is Faith Nieber, I am 23 years old, and I grew up in Galway, NY with my twin sister. I now live in Clifton Park, NY with my boyfriend, who, like me, has bladder exstrophy. With the support of my amazing family and the exceptional care I received at Boston Children’s Hospital, I was inspired to become a nurse. I studied at Maria and Siena College in Albany and now work as a pediatric nurse. I truly love my job, it’s deeply rewarding to support children and witness their growth every day.

When I’m not working, I love staying active. Some of my favorite hobbies include working out, hiking, pickleball, cornhole, running, camping, and traveling. Whether I’m exploring new places or spending time outdoors, I always try to make the most of life.

I’m truly honored and excited to be part of ABEC. It means a lot to be able to contribute to a cause that has personally touched my life, and I look forward to giving back to this amazing community.

Jacob Peltier

Jacob Peltier was born in the mid 1980’s with Cloacal Exstrophy.  He received his initial surgeries and treatment at Seattle Children’s Hospital and continues to receive adult care at University of Washington and Harborview Medical Center in Seattle.

Jacob has an undergraduate degree in emergency services management and a masters in business administration.  Jacob is also currently pursuing a masters of science in safety, security and emergency management.  Professionally, he has worked the last 15 years in a variety of government and non-profit roles focused primarily on security and emergency management.

He has served on multiple non-profit boards and organizations, most recently serving as a volunteer with the American Red Cross providing consulting services.  When not working or volunteering, Jacob enjoys travel, cooking, movies, video games and spending time with his wife and their dog Buster.