Researcher Advocate

Researcher Advocate


January 3, 2008


Activity is Ongoing
Scholarly Activity Role: 
Subject-Matter Expert
Organization Name: 
IA-Parent Listserv
Role or Title within the Organization: 
Researcher Advocate for medically-based/nursing-based community

Approximately 10 years ago I co-founded the Imperforate Anus (IA)/VACTERL Association Parent listserv. The intent of this Listserv was to develop an environment designed to serve parents with children diagnosed with IA/VACTERAL Association 24/7, and provide an avenue of communication between the specialists in that medical community and those parents. To that end I have participated as both a researcher advocate for this medically-based/nursing-based community, and as a parent with a child diagnosed with IA/VACTERL Association.  Our community has grown to over 800 parents worlwide and we have provided on-demand assistance with care questions, educational materials, and have served to facilitate communication with specialists. This community has served as my population for the first of a series of surveys designed to provide information to both the parents and medical community. Working with Dr.Shumyle Alam, Associate Professor of Urology and Director of Pediatric Urologic Reconstruction at Columbia University Medical Center, we will publish the results of this survey with the goal being to inform and educate the medical community on the variety of treatment options, outcomes, and needs of this community.