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Tracking Rare Incidence Syndromes project
College of Education and Human Services
Deborah A. Bruns is a Full Professor in the Special Education Program in the Department of Counseling, Quantitative Methods and Special Education at Southern Illinois University. Dr. Bruns has published in professional journals on the topics of play-based assessment, preschool inclusion, leadership in early intervention and feeding issues for young children with disabilities. She has presented at regional and national conferences on these topics and co-authored a book on feeding entitled 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 20 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. 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.
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.
Emily Campbell is an undergraduate student at Southern Illinois University. She is currently working on her bachelor’s degree in Special Education with dual certification in Special Education and Elementary School Education and with endorsements in Middle School English and Science. Upon graduation, she plans on continuing her education and working toward a M.A.T. in Secondary Education. Her greatest hope is to teach Middle School Science. She believes that having a background in Special Education teaching techniques will not only benefit her in her understanding of teaching, but will also be beneficial to all students she will teach.
“I am very excited to be included as a part of the TRIS project and to begin research. I hope that through our research we are able to help a family, that without our information would be lost."
Alyssa Martinez is an Undergraduate student at Southern Illinois University. She is currently working towards her bachelor’s degree in Special Education with a minor in Spanish. After graduation, she plans on working with programs such as Teachers for America. This will allow her the opportunity work with a diverse group of students growing up in poverty and ensure that they receive an excellent and empowering education. She believes that having a bachelors in Special Education and having the ability to communicate in Spanish will enhance her teaching ability and empower students, parents, and communities to work for a more intimate education.
“I look forward to having the opportunity to contribute to the TRIS project and the families it will serve.”
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, 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.
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.