Tracking Rare Incidence Syndromes

Staff

Deborah A. Bruns is an Assistant 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.

Evelyn Barrientos-Perkins is a graduate student at SIUC in the Department of Curriculum and Instruction.  She is interested in early childhood education and in special education methods.  She wants to learn all she can about special education methods so she can better help her preschool-aged son who has developmental and language delays.
 
Her undergraduate degree is in Liberal Arts from SIUC. Before moving to the United States, she completed three semesters of Psychology at the Dominican Republic, her native country.
 
She says, "I realized that I wanted to work with children and families, after meeting the wonderful women that were part of my son’s early intervention team.  They inspired me and showed me that I can make a difference in the lives of children with special needs by helping their parents find and understand all the services available to them and their children."

Marissa Cooley-Code is a graduate student at Southern Illinois University. She is currently working toward her Master’s degree in Early Childhood Special Education. Upon graduation, her desire is to complete her Developmental Therapy credential and work with infants and toddlers with disabilities and their families.

Marissa completed her Bachelors of Science degree in Communicative Disorders and Deaf Education, with a minor in English Literature, from Utah State University. Marissa realized from a young age that she wanted to work with children with disabilities. During the past four years, Marissa has had many opportunities to work with young children with speech and language disorders, autism, Down syndrome and other disabilities. She enjoys research and is excited to learn as much as she can from the TRIS project and the families involved.

“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.”

Bill Bruns is the TRIS Webmaster. He is the Webmaster for the Student Center at Southern Illinois University Carbondale. 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.