Location/Time Zone: Chicago, IL / CST

Role: Associate Professor in the Marcella Niehoff School of Nursing at Loyola University Chicago.

Research Interests: Examining self-management behaviors, family functioning, and quality of life in families living with children who have chronic conditions such as spina bifida.

Goals: To better understand how families impact self-management and develop interventions that strengthen families to optimize health and quality of life.

Hobbies: Reading, cooking, and listening to live music.

Location/Time Zone: Chicago, IL / CST

Role: Study Biostatistician.

Research Interests: Longitudinal modeling experiences and interventions for individuals living with spina bifida.

Goals: To identify valid and reliable measures for clinical trials that enroll individuals living with spina bifida.

Hobbies: I enjoy going to restaurants and spending time with friends, family, and pets!

Location/Time Zone: Houston, TX / CST

Role: Associate Professor of Internal Medicine and Pediatrics, Section Chief and Medical Director of Transition Medicine at Baylor College of Medicine, Director of the Texas Children's Hospital Spina Bifida Transition Readiness Clinic. 

Research Interests: Self-management, Transition to Adult Care, and Adult Care for Individuals with Intellectual and Developmental Disabilities.

Goals: Develop Exemplar Transition to Adult Care and Comprehensive Primary Care Practices for Youth and Adults with IDD.

Hobbies: Being a mom to three boys, reading biographies, playing the piano, creative cooking, and teaching at our church.

Location/Time Zone: Milwaukee, WI / CST

Role: PhD-prepared Nurse Scientist working as a Co-Investigator.

Research Interests: Health promotion and disease prevention in individuals living with developmental disabilities and understanding the role of family members.

Goals: To partner with and learn from individuals and families of individuals living with spina bifida to optimize health.

Hobbies: Spending time with friends and family, along with reading and traveling.

Location/Time Zone: Milwaukee, WI / CST

Role: Registered nurse and PhD candidate working as the Spina Bifida Program Coordinator at Children's Wisconsin.

Research Interests: Use of mHealth applications to support self-management in adolescents and young adults with disabilities.

Goals: To complete my dissertation, advance my program of research, and continue providing direct patient care to children with spina bifida. 

Hobbies: I love spending time with my 3 children. We frequently hike, bike, and bake together. I also enjoy reading books- any genre!

Location/Time Zone: Merced, CA / PST

Role: Associate Professor of Health Psychology, with methodological expertise using ecological momentary assessment and wearables to assess stress, sleep, and well-being among emerging adults.

Research Interests: To understand the bidirectional relationship between stress and management of chronic disease.

Goals: To develop research methods that allow measurement at the point-of-care and the downstream consequences after these care moments.

Hobbies: I enjoy cooking delicious and often complicated meals (spending 3 hours cooking on Saturdays is a common occurrence), gardening, walking my dog Samson (although he would say we could be doing more of this), and hiking.

Location/Time Zone: Indianapolis, IN / EST

Role: Registered nurse working as a research assistant, adult living with spina bifida.  

Research Interests: Self-management experiences and interventions to empower adults living with spina bifida.  

Goals: To become an independent nurse consultant and return to graduate school to complete my PhD in Nursing Science.  

Hobbies: I enjoy singing in my local women’s chorus, learning piano, reading, and spending time with friends, family, and my pets! 

Location/Time Zone: Chicago, IL / CST

Role: Research Assistant.

Research Interests: The relationship between physical health and mental wellness; trauma, resilience, and the effects of poverty on youth. 

Goals: To develop and implement accessible programs for inter-city youth, which support their health and educational success.  

Hobbies: I enjoy reading, exercising, playing instruments, and exploring the neighborhoods of Chicago.