Alan Percy, M.D., Chairman
Pediatric Neurologist
University of Alabama at Birmingham

Alan Percy, M.D., is a pediatric neurologist and internationally known researcher on Rett syndrome. He has occupied prominent leadership positions in numerous academic neurological societies and is Past President of the Child Neurology Society and the Child Neurology Foundation. Dr. Percy has served as Director of the American Board of Psychiatry and Neurology, is a Fellow in both the American Academy of Pediatrics and American Academy of Neurology and is actively involved in many national and international pediatric and neurology societies. For the 10th consecutive year, Dr. Percy was recently named one of America's Best Doctors on the www.bestdoctors.com web site. Only 4% of America's doctors are recognized in these listings based on surveys sent to leading specialists around the world. Dr. Percy has served as Scientific Director for the International Rett Syndrome Association and has organized and led several international scientific meetings on Rett syndrome. The first NIH funded Rett center was established under Dr. Percy at Baylor College of Medicine in 1986. He currently serves as Professor of Pediatric Neurology, Associate Director CIRC Director, Alabama's UCEDD UAB LEND Project Director UAB MRRC, and Director of the Civitan-Sparks Clinic s of the Civitan International Research Center at the University of Alabama at Birmingham. In addition to authoring more than 120 scientific papers on Rett syndrome, Dr. Percy is a co-author of The Rett Syndrome Handbook.

Paul Sponseller, M.D.
Pediatric Orthopedist
Johns Hopkins Medical University Hospital

Tina Iyama-Kurtycz, M.D.
Developmental Pediatrician
University of Wisconsin

Dr. Iyama-Kurtycz is Director of the Waisman Center Cerebral Palsy and Child Development Clinics at the University of Wisconsin, where children with neurodevelopmental problems receive continuity of care. They receive comprehensive evaluation, long-term treatment, follow-along care and reevaluation by the core interdisciplinary staff along with orthopedists and other medical specialists. Strong relationships with the families of clients and links with other community service agencies are in place. Since the majority of clients have multiple handicaps, their needs are complex and require a high degree of coordination between groups to insure that services meet commonly recognized and agreed-upon goals. The Child Development Clinic provides developmental pediatric assessment of young children who have developmental delays and assists parents with questions they may have related to their children. Many of the children seen in this clinic are referred for concerns about possible autistic spectrum disorders. Dr. Iyama-Kurtycz has devoted many years to the care of girls with Rett syndrome and has a broad knowledge of the disorder.

Karen Erickson, Ph.D.
Special Educator
Center for Literacy and Disability Studies
University of North Carolina

Karen Erickson, Ph.D., is an Associate Professor, Department of Allied Health Sciences, University of North Carolina. Dr. Erickson is the current director of the Center for Literacy and Disability Studies, where she has played a leading role in developing this course and the Symposium on Literacy and Disabilities. She holds a Ph.D. in Special Education and Literacy Studies from UNC and is a former teacher of children with significant disabilities. Knowledgeable in literacy, assistive and instructional technologies, augmentative communication, and the learning characteristics of children with significant disabilities, she is in great demand as a presenter, consultant, and program developer. In 2004, Dr. Erickson was awarded the Educator of the Year Award from the National Down Syndrome Congress and the ISAAC Distinguished Literacy Lectureship Award. Her assessment and intervention strategies are described in numerous journal articles and book chapters. Dr. Erickson currently heads a research and development team developing web-based literacy supports for young adolescents with severe disabilities and their teachers.

Kathleen Motil, M.D., Ph.D.
Gastroenterologist
Baylor College of Medicine

Kathleen Motil, M.D., Ph.D. is a Pediatrician at the Blue Bird Circle Rett Center at Baylor College of Medicine. Her primary interest is in nutrition and gastroenterology. She has investigated various aspects of nutrition, energy expenditure and nutrient supplementation in Rett Syndrome. Dr. Motil has studied specific aspects of oropharyngeal and gastroesophageal dysfunction in Rett Syndrome as well. Her work has emphasized the need for careful nutritional monitoring in the individual with Rett syndrome.

Lisa Forman, Ph.D.
Geneticist
National Institutes of Health

Jane Lane , RN, BSN
Research Nurse Manager and Clinical Coordinator - Rett Clinic
University of Alabama at Birmingham

Jane Lane, RN, BSN, is Research Nurse Manager, Civitan International Research Center, University of Alabama at Birmingham (UAB). Prior positions include Research Nurse and Clinical Coordinator for the Rett Syndrome Clinic at the UAB. She has co-authored scientific papers on RS, and has received several nursing awards. Ms. Lane has been on the board of the

Association of Child Neurology Nurses and the Professional Advisory Board of the Epilepsy Foundation of North and Central Alabama. She is an outstanding advocate for children with Rett syndrome.

Valerie Owen, Ph.D.
Special Educator
National Louis University

Valerie Owen, Ph.D., began her career as a teacher of children with significant disabilities. Her current work is centered around access to the general education curriculum for students with the most significant disabilities. She considers this focus on access to education within the context of identifying the conflicts between the clinical/medical models of disability and the emerging disability rights and disability culture perspectives in education. Through this socio/culture alliance, disability is seen not as a deficit within the person, but rather as an interaction between the person's abilities, the environment, and societal attitudes towards deviance. This alternative view of disability, she believes, provides a more holistic view of the individual. Her hope is that all children will be viewed as educable and that they will have opportunities to learn and grow in schools. She is a consultant in a number of schools in the city and in the suburbs of Chicago and also serves on a number of board and committees included the Wheeling Township Advisory Committee on Disabilities, the Professional Advisory Board of IRSA, and Immediate Past President of TASH (a research and advocacy organization for persons with severe disability). She is a co-author of the Rett Syndrome Handbook and has given presentations on Rett syndrome.

Cheryl Sinner, M. Ed, CCC-SLP
Assistive Technology Specialist
University of Louisiana at Lafayette

Cheryl Sinner, M.Ed., CCC-SLP, is currently Ph.D. candidate at the University of Louisiana at Lafayette. She was formerly a speech language pathologist and Assistive Technology Specialist at the Hopewell Special Education Regional Resource Center (SERRC) in Hillsboro, Ohio. She has worked as a school based speech language pathologist. As an Assistive Technology Specialist, she assisted local school systems with students with low incidence disabilities (including RS) to find the appropriate assistive technology and augmentative communication (AAC) solutions for their students. She provides training for teachers, speech therapists, administrators and parents on how to use a wide variety of assistive technology systems that include: picture use, eye gaze systems, low technology AAC, high technology AAC, computer access, environmental access, and educational adaptations for learning.

Susan Norwell, M.S.
Special Educator
Private Practice

Susan Norwell, M.S., has worked with a wide array of students, primarily those with autism spectrum, for more than twenty years. She has spent the last fifteen years in private practice working primarily with children on the autistic spectrum and girls who have Rett syndrome. She is trained in "Greenspan's Floortime" model and would consider herself a relationship based educational specialist. She has focused in the recent past on augmentative communication, play and literacy for children on the spectrum especially those without verbal language. She consults to various school districts on successful inclusion of children with autism and has presented workshops throughout the U.S. and Canada. Susan is well known for her broad knowledge base as well as practical and creative ideas.

Jan Townsley, OTR/L, BCP
Occupational Therapist
Private Practice

Jan Townsley is a registered Occupational Therapist with specialty certification in pediatrics. She has worked extensively in both a clinical and consultative capacity for the past 18 years and currently has a private practice in Mountain View, Arkansas. Jan works with children in early intervention, pre-school and school based programs. She has served as a parent representative for the state's Title V program, and coordinates a local parent support group. Ms. Townsley has made numerous presentations on Rett syndrome to both parent and professional organizations and has served on the Professional Advisory Board of the International Rett Syndrome Association. She is a co-author of The Rett Syndrome Handbook. Ms. Townsley's interest in RS has been long-standing and her devotion comes, in part, from her 27 year old daughter who has been diagnosed with Rett syndrome.