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.
