Leadership

President & Executive Director

Pamela Artigas

Pamela is the adoptive mother of two medically complex children — one with bladder exstrophy and another with congenital heart disease and Ehlers-Danlos syndrome — and draws on her lived experience to support families and clinicians navigating rare and complex conditions worldwide.

She collaborates with and supports clinicians and families globally, having worked with patients on nearly every continent. Each year, she personally supports hundreds of families — including more than 200 in India and over 100 in Uganda — while connecting daily with families and expert surgeons, nurses, and psychosocial workers  from around the world. She delivers presentations at both physician- and family-focused conferences, including Beyond Surgery: Empowering the Patient Population and From Grassroots to Global Impact: Navigating Complex Conditions. Her presentations have reached audiences in Paris, Madrid, Barcelona, Panama, and Washington, D.C., as well as families in India and Uganda and at leading children’s hospitals across the United States.

Pamela also advocates at the national policy level, participating in the Advocacy Summit in Washington, D.C., which unites urologists, patient advocates, and policymakers to influence healthcare legislation and elevate the needs of the urologic patient community.

She is the author of the chapter Advocacy for the Exstrophy Community: Empowering and Encouraging the Patient and Family, the creator of the Emergency Management Toolkit — a resource designed to help families navigate urgent situations when living with rare and complex medical conditions — and has co-authored multiple medical publications on patient experiences, quality of life, and outcomes in rare and complex medical conditions.

As President and Executive Director of A-BE-C, Pamela has spent more than a decade building a global support network connecting patients, families, and the medical community. Under her leadership, A-BE-C provides families worldwide with the guidance, resources, and support needed to access care, improve outcomes, and enhance quality of life. Pamela brings extensive experience in nonprofit leadership, organizational development, and strategic program management. She is certified in executive leadership and emotional intelligence facilitation and holds a Certificate in Nonprofit Leadership from Duke University, which she leverages to train, mentor, and collaborate with healthcare teams and advocacy organizations worldwide.

Founder & President Emeritus

Jeffrey A. Niezgoda, MD

Following the 1989 birth of a son with bladder exstrophy, Dr. Jeffrey Niezgoda and his wife, Kathleen, established Association for the Bladder Exstrophy Community (A-BE-C) with the hope of empowering and reaching out to other families with children with exstrophy.

Since its inception, A-BE-C has grown from a group of 70 families to several hundred, providing support to patients and families spanning the world. Dr. Niezgoda and his wife continue to actively participate providing guidance and philanthropic support.

Dr. Niezgoda is the President & Chief Medical Officer of AZH Centers, an independent non-hospital based practice. Advancing the Zenith of Healthcare is a novel company dedicated to excellence in wound, vascular and regenerative clinical services. Dr. Niezgoda is also the founder of Web CME, an international educational company with a mission to provide wound care and hyperbaric education over the internet.

He is the President of the American Professional Wound Care Association and the Immediate Past President of the American College of Hyperbaric Medicine. Dr. Niezgoda holds an M.D. from the Uniformed Services University of the Health Sciences, F. Edward Herbert School of Medicine, Bethesda, Maryland, and is a 1981 graduate of U.S. Air Force Academy.

Advisory Board Chair

Evalynn Vasquez, MD, MBA

Dr. Evalynn Vasquez serves as the Director of Complex Reconstruction and Malformations Program and is an Assistant Professor of Urology working in the Division of Pediatric Urology at Children’s Hospital Los Angeles.

Specialty – Dr. Vasquez focuses on the medical and surgical management of complex pediatric urology anomalies, including reconstructive surgery for incontinence and neurogenic bladder, Spina Bifida, bladder exstrophy, colorectal malformations and cloacal malformations.

Education – Dr. Vasquez is originally from South Pasadena, California and earned her undergraduate degree at the University of California, Los Angeles. She then went to medical school at Saint Louis University where she earned a dual MD-MBA degree. After graduation she started her residency at Saint Louis University, then completed her residency in Urology at Loyola University in Chicago. She went on to complete her Pediatric Urology Fellowship through Harvard University’s program at Boston Children’s Hospital. Dr. Vasquez is board-certified from the American Board of Urology in Urology.

Other – Dr. Vasquez has extensive experience in both clinical and basic science. During her fellowship, she studied proteins that control bladder contractility in mice and worked with the Multi-Institutional Bladder Exstrophy Consortium (MIBEC) to produce several papers and videos. Dr. Vasquez now focuses on research on the psychosocial impact on outcomes of complex reconstructive surgery and aims to assess patients’ surgical readiness prior to major surgery.

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.

Board Member

Tom Exler

Born with bladder exstrophy, Tom Exler has been a champion for raising awareness and support for bladder exstrophy most of his life. In the early 1970s, his mother and surgeon founded a support group for parents of children with ostomy and intestinal or urinary diversions. He made his first speech about living with exstrophy in 1976 at the age of 10. Since then, he has given many speeches and volunteered with organizations, including as a camp counselor at the United Ostomy Association Youth Rally.

He founded the United Ostomy Association Young Adult Network in 2002. He has been a member of ABC since 1994 and vice president since 2006.

Board Member

Janet Gibson

Janet has been advocating for vulnerable children in Uganda since 2009 when she first visited Uganda in support of a non-profit charity working with AIDS related orphans. In 2010, she moved to Jinja, Uganda, with her husband Paul and their youngest daughter to volunteer with the local staff of Children of Grace, serving orphans through education, medical and ‘after school’ programs. It was during this time that Janet first met Solomon, a child born with Cloacal Exstrophy. Since no medical support was available in Uganda, Janet advocated for Solomon to get proper surgical care first in Kenya, and subsequently in Canada.

Janet graduated from Colorado Christian University with a BS in Organizational Project Management. After an early career in the Airlines industry working for American Airlines, Janet retired to devote her time and talents in raising her four children, Meagan, Andrew, Phillip and Cassidy – while her husband Paul pursued his career in the corporate world of Information Technology.

Following her return from Africa, with her children now grown, Janet has had the time to continue her non-profit work in serving ‘the least of these’ both in Africa as well her local community. She continues to advocate for and support Solomon and his family in his continued medical needs associated with his cloacal exstrophy condition, along with other children with urological needs in Uganda. She is also involved with the SKB Foundation and its work bringing the arts to underprivileged school children in communities across the U.S.

Janet brings a compassionate heart and the decades of experience in raising her family while living in many parts of the US as well as Uganda to her work in advocating for vulnerable kids. While pursuing these passions, she also finds lots of time to enjoy her three young grandsons, as well as her passion for the creative arts through pottery. Janet and her husband, Paul now reside in Denver, Colorado, since relocating from the San Francisco bay area in 2015.

Global Care Coordinator

Emily Haddad, LCSW

Specialty – Emily Haddad LCSW, is a licensed clinical social worker who specializes in behavioral health support and wellness for children and families with bladder exstrophy, cloacal anomalies, anal rectal malformations, and disorders of sex development. She is passionate about educating children about their bodies, health history, and daily care to support their future goals.  Ms. Haddad is on the medical advisory board for the Association for the Bladder Exstrophy Community. She acts as a medical liaison among specialties, provides individual, family and group therapy as a licensed clinical therapist, and is a patient advocate and educator. 

Education – Haddad received her bachelor’s from the University of Vermont in Anthropology and Sociology with a minor in Art. She completed her masters at the University of Michigan, School of Social Work where she was a graduate student instructor in Sociology.  Her internships were completed at The Hospital for Sick Children, Department of Urology, in Toronto, Ontario and at Toledo Children’s Hospital, NICU. She is currently pursuing a Master of Bioethics at Johns Hopkins University in the School of Public Health.

Uganda Program Director

David Mukisa, B.Pharm., MPS

David Mukisa holds a Bachelor’s Degree in Pharmacy and has worked with National Medical Stores for their procurement and logistics department, and for The AIDS Support Organization (TASO) in Uganda as a Lead Pharmacist. He currently serves as a Program Officer in supply chain management with the United States Agency for International Development (USAID).

As A-BE-C Uganda Program Coordinator David is responsible for coordinating surgical workshops with outside corporations, supervising project workers, and managing expenses. In addition he has the important task of quarterly check-ins with exstrophy patients, and assists with scheduling and transportation for follow-up care.

David’s son Solomon was born with cloacal exstrophy and the family has been featured on A-BE-C’s website. David and his wife Mary were tenacious in finding the best care for their son. Since then they have worked tirelessly to help all those living with exstrophy in Uganda.

Research 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.