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Tracking Rare Incidence Syndromes
College of Education and Human Resources
Deborah A. Bruns is an Associate Professor in the Department of Educational Psychology and Special Education at Southern Illinois University, Carbondale. She received her Ph.D. from the University of Illinois at Urbana-Champaign.
Dr. Bruns has published in professional journals on the topics of family-centered practices, parent-professional relationships, and early childhood transitions. She has presented at regional and national conferences on these topics as well as cultural diversity in early childhood programs. She is active in state and national level organizations focusing on young children with disabilities and their families.
Dr. Bruns has had an interest in rare trisomy conditions for over 10 years. She began as a classroom teacher in New York City working with young children with multiple disabilities including preschoolers diagnosed with trisomy 18 and, now, as the principal investigator for the Tracking Rare Incidence Syndromes (TRIS) project.
Shirley Truesdale Lockwood ("Fawna") is the parent of an adult with partial trisomy 6p, and a Licensed Vocational Nurse by education. She also received an AA degree from Cuesta Community College, San Luis Obispo, CA. in 1973.
Her nursing background includes working as a medication/treatment nurse in geriatric and convalescent settings, temporary staff relief registry work for acute care facilities, private duty nursing, running her own special needs daycare home for over 20 yrs, and currently working as her own daughter's In Home Support Services' worker.
Ms Lockwood is a long time member of several on-line rare trisomy support list servs. And as such she has actively participated in numerous letter and/or e-mail writing campaigns advocating better treatment for rare trisomy children. She has also peer counseled newer parents, worked with Dr. Bruns on developing the "Riding The Trisomy Rollercoaster: Caring For Children With Low Incidence Syndrome" poster presentation for the Oct ' 03 Washington, DC Division of Early Childhood of the Council for Exceptional Children Conference, and is currently the Research Coordinator for the Tracking Rare Incidence Syndromes (TRIS) Project.
Marissa Baxter is a doctoral student at Southern Illinois University. She completed her Master’s degree in Early Childhood Special Education in May 2009. Her thesis was entitled, Developmental surveillance and screening: Practices of pediatricians and family physicians in the nine southern counties of Illinois. She hopes to continue work in this area for her dissertation. She is a Developmental Therapist working with infants and toddlers with disabilities and their families.
She has a bachelor's degree in Communication Disorders and Deaf Education.
“I am very excited to be involved with the TRIS project. I want to learn as much as I can from the families and other professionals involved. I know that this will be a very valuable experience for me.”
Carly Schrey is an undergraduate student at Southern Illinois University. She is currently working on her bachelor’s degree in Special Education. Upon graduation, she plans to teach students with disabilities in inner-city school districts. She plans on continuing her education and becoming a behavior analyst.
Prior to attending Southern Illinois University, Carly completed a bachelor’s degree at the University of Illinois in Champaign-Urbana in Anthropology. She also worked for two years with the Champaign Special Recreation Program. She is very interested in incorporating children with disabilities in sports and other leisure activities.
“I am very excited to be part of the TRIS project and to begin doing research. This project has already done so much and I hope that I can make a contribution to its progress. I am most excited about working with families and children in the project because without them this would not even be possible.”
Bill Bruns is the TRIS Webmaster. He is the Deputy Director for the Student Center at Southern Illinois University Carbondale, where he is responsible for the ID Center, Debit Dawg, Saluki Express Bus Service, Campus Vending and Student Center Information Technology.
Before that, he cotaught “An Adventure of the American Mind,” which teaches K-12 teachers how use the Library of Congress’s American Memory database to create a multimedia curriculum for their students.
Since 1995, he has been a technical editor, working on more than 125 books relating to the Internet, Web Servers, HTML, Operating Systems and Office Applications.
Originally planning to work in television production, his interest turned to computers while working on an undergraduate internship at Square One TV, a children’s mathematics show produced by the Children’s Television Workshop in New York City.
Bill holds bachelors degrees in Telecommunications and English Literature from Indiana University and a Masters of Public Administration from New York University.
Fred Hees is a Local Area Network Administrator for the College of Education and Human Services at Southern Illinois University Carbondale. He also provides technical support and database administration for various grants and projects including TRIS.
Fred holds a bachelors degree in Computer Science from Southern Illinois University and has been with the College of Education and Human Services since 1983.