Member of the Family Advisory Council since: 2012
Experience/Areas of Interest: Kidney transplant and dialysis, inpatient experiences, children with disabilities and complex medical care, pediatric palliative care, rare and undiagnosed diseases.
Brenda is the mom of three children. Her youngest daughter, Jillian, was born with complex medical needs and disabilities, which were recently diagnosed as an extremely rare WDR19 related ciliopathy disease. In 2002, when Jillian was an infant, she received a kidney transplant at Boston Children’s, and has had many other inpatient experiences at the hospital. She is also followed by numerous specialists in the hospital’s outpatient care clinics. Because Jillian’s condition is currently considered to be a unique genetic variant, Brenda has found it crucial to cultivate collaborative partnerships with medical teams to think “outside the box” in developing care plans.
Brenda is grateful for the expertise and innovation of the physicians and staff at Boston Children’s. She was involved in the early development of an FAC at her local hospital, and in 2012 joined the Boston Children’s Hospital Family Advisory Council to work with other families on projects to support family-centered care. She is particularly committed to working on projects relating to communication between families and providers and coordination of care across practices and hospitals.
Brenda lives in Western Massachusetts and works as a teacher of students with visual impairments, focusing on early childhood education. Her experiences with her daughter as well as her students have given her a passion for helping families of children with rare and complex diseases become active leaders in systems of care.