Deborah A. Bruns is a Professor in the Special Education Program in the School of Education at Southern Illinois University. Dr. Bruns has published in professional journals on a range of topics in early intervention including feeding issues for young children with disabilities. She has presented at regional and national conferences and co-authored a book on feeding (Feeding challenges in your children: Strategies and specialized interventions for success, 2012, Brookes Publishing). 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 25 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, since 2007, as the Principal Investigator for the Tracking Rare Incidence Syndromes (TRIS) project. She has presented TRIS project data to national and international audiences and published in journals reaching a variety of medical professionals involved with rare syndrome populations as well as outreach through the TRIS project website and Facebook page.
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.
Taeya Houzenga is an undergraduate student majoring in elementary education and is considering returning for her endorsement in special education. She is assisting Dr. Bruns with the Tracking Rare Incidence Syndromes (TRIS) project. She is interested in rare incidence syndromes due to growing up with a sibling who was given multiple, negative prognoses and has outlived them all.
Alexis Petrilla is an undergraduate student majoring in Rehabilitation Services. Once she graduates with her bachelor's degree, she will provide a range of services for individuals with disabilities, mental health concerns, and substance abuse disorders. She is assisting Dr. Bruns with the Tracking Rare Incidence Syndromes (TRIS) project. Alexis is interested in rare incidence syndromes since she has two cousins with a disability.
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 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.
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.
Fred Hees is a Local Area Network Administrator at Southern Illinois University Carbondale. He also provides technical support and database administration for various colleges, schools, departments, grants and projects including TRIS.
Fred holds a bachelors degree in Computer Science from Southern Illinois University and has been with the SIU since 1983.