NDSC Professional Advisory Council
The Professional Advisory Council serves as a resource for the NDSC staff. When we receive questions from our members, they can draw from a wealth of knowledge and experience to offer the most accurate, updated information. The Professional Advisory Council members also contribute to the Down Syndrome News and website and frequently present at the annual convention.
- Adult Issues: Brian Chicoine, M.D.; Dennis McGuire, Ph.D.
- Communication: Libby Kumin, Ph.D; Grace O. Williams, M.Ed., CCC-SLP
- Dental: Sindoor Desai, DDS
- Education: Michaela D’Aquanni, Ph.D.;Paula Kluth, Ph.D.
- Employment: Robert Lawhead
- Legal: Kathleen Marafino, JD; Heather Sachs, JD; Ricki Sabia, JD
- Medicine: George Thomas Capone, M.D.; Sally Shott, M.D.; Marjorie Greenfield, M.D.; Laura Cifra-Bean, M.D.
- Nutrition: Joan Medlen, RD, LD
- Occupational Therapy: Maryanne Bruni, BSC OT
- Pediatric Issues: Kishore Vellody, M.D.; Nicole Baumer, M.D.; Jeannie Visootsak, M.D.
- Physical Therapy: Pat Winders, PT
- Sexuality: Terri Couwenhoven, M.S., AASECT Sexuality Educator
- Social Work and Literacy: Betty Hersey, LMSW
More information about our experts
Maryanne Bruni, BSC, OT, is an occupational therapist specializing in pediatrics. She holds a B.S. in Occupational Therapy from the University of Toronto. Currently, Maryanne is a Fieldwork Supervisor at the University of Toronto Department of Occupational Therapy and is an occupational therapist at a preschool servicing children with special needs and their families. Author of Fine Motor Skills in Children with Down Syndrome, Maryanne has three children and the youngest, Sarah, has Down syndrome.
George Capone, M.D., is the Director of the Down Syndrome Clinic at the Kennedy Krieger Institute, Division of Neurology & Developmental Medicine and an assistant professor in the Department of Pediatrics, Johns Hopkins University, both in Baltimore , Maryland. Dr. Capone received his undergraduate degree in biology from Wesleyan University in 1977, was a cell biology and biochemistry research assistant at the Dana Farber Cancer Institute in Boston from 1977 to 1979 and earned his M.D. in 1983 from the University of Connecticut School of Medicine. After clinical fellowship training in developmental pediatrics at the University Affiliated Cincinnati Center for Developmental Disorders at Children’s Hospital Medical Center in Cincinnati and research fellowship training in molecular neurobiology at Johns Hopkins University School of Medicine, Capone became the Director of the Down Syndrome Clinic of the Kennedy Krieger Institute in 1990. Dr. Capone is a member of the board of directors of the National Down Syndrome Congress, serves on the NDSC Professional Advisory Council and on the Scientific Advisory Board of the National Down Syndrome Society. The author of too many professional papers and articles to list here, George resides in Baltimore, Maryland with his spouse, Mary Ellen Cody, M.D., and their two children.
Brian Chicoine, M.D., is the Medical Director for the Adult Down Syndrome Center of Lutheran General Hospital in Park Ridge, IL, and is a Clinical Assistant Professor in the Family Practice Department of the Medical College of the University of Illinois at Chicago. He is co-founder of the Adult Down Syndrome Center, which has served over 2800 adults with Down syndrome since its inception in 1992. Dr. Chicoine graduated from Loyola University Stritch School of Medicine and completed his Family Medicine residency at Lutheran General Hospital. He has provided medical care for adults with developmental disabilities for more than 15 years, and has made many national and local presentations, as well as published numerous articles in this area.
Laura Cifra-Bean, M.D., is a director of the National Down Syndrome Congress and co-chair of the Professional Advisory Council. A pediatrician in a hospital-owned group practice, Dr. Cifra-Bean earned her M.D. at Case Western Reserve University School of Medicine and served her pediatric residency at Rainbow, Babies, and Children’s Hospital 1993-1996. Laura and her husband Andy have three children, and her son Christopher has Down syndrome. Her practice includes providing care for many patients with Down syndrome, and she claims that it is the part her job she loves most.
Terri Couwenhoven, M.S., educator and consultant, assists agencies in the design, implementation, and evaluation of education and training programs that address sexuality issues. She specializes in working with persons with developmental disabilities, their families and the professionals who support them. Certified by the American Association of Sex Educators, Counselors and Therapists as a sexuality educator, Terri has developed resources aimed at helping families and professionals address sexuality issues. She recently completed a book designed to help parents who have children with cognitive disabilities teach and support healthy sexual development throughout the lifespan. Terri is part-time Clinic Coordinator for the Down Syndrome Clinic of Wisconsin at Children’s Hospital of Wisconsin. Ms. Couwenhoven has a M.S. in Administrative Leadership and Supervision in Adult Education from University of Wisconsin-Milwaukee and holds a B.S. degree in Community Health Education from the University of Wisconsin-La Crosse. She is the parent of two daughters. Anna, her oldest daughter, has Down syndrome.
Sindoor Desai, BDS, is a dentist in family practice with her husband in Phoenix, New York. She graduated from Naiv Hospital Dental College in Bombay, India in 1970 and was a resident in oral pathology and diagnosis at the same institution from 1971 through 1972. Sindoor has published three papers on dental issues for people with Down syndrome and has several others in progress. She is married with two sons, one of whom, Sujeet, has Down syndrome.
Jose C. Florez, M.D., Ph.D., is a board-certified internist and endocrinologist who directs the Down Syndrome Clinic for Adults and Adolescents at Massachusetts General Hospital. He completed his residency and fellowship at the Massachusetts General Hospital and has additional training in neurology. He is the recipient of the Christian Pueschel Memorial Award, granted by the National Down Syndrome Congress. He conducts active research on the genetics of type 2 diabetes. His sister Miriam has Down syndrome.
Marjorie Greenfield M.D., is an Associate Professor of Obstetrics and Gynecology at the Case School of Medicine and University Hospitals in Cleveland, Ohio. A 1983 graduate of Case Western Reserve University School of Medicine, Marjorie was a resident in Obstetrics and Gynecology at University Hospitals of Cleveland and Cleveland Metropolitan General Hospital from 1983 to 1987. Marjorie specializes in pediatric and adolescent gynecology and cares for many girls and women with special needs, including several with Down syndrome. She is the author of a number of books, including Dr. Spock’s Pregnancy Guide. Dr. Greenfield is married to Dr. Anthony Post and has a son, Dan, who was born in 1989.
Paula Kluth, Ph.D., is an independent educational consultant and an adjunct instructor at National Louis University in Chicago, Illinois. Her professional and research interests center on differentiating instruction and on supporting students with autism and significant disabilities in inclusive classrooms. She has a M.Ed. in Educational Policy from the Harvard Graduate School of Education and a Ph.D. in Special Education from the University of Wisconsin. She is a former special educator who has served as a classroom teacher, consulting teacher and inclusion facilitator. She is the author of You’re Going to Love This Kid: Educating Students with Autism in Inclusive Classrooms and the lead editor of Access to Academics: Critical Approaches to Inclusive Curriculum, Instruction, and Policy (with Doug Biklen & Diana Straut). She has also written several articles and chapters on inclusive schooling and is currently conducting research on the literacy experiences of students with autism. She thanks the real experts – those with disabilities and their families – for sharing their lives and expertise and teaching her all she knows about disability, ability and inclusion.
Libby Kumin, Ph.D., CCC-SLP, is a nationally and internationally renowned expert in speech and language pathology whose expertise is recognized by both professionals and parents alike. Dr, Kumin is a professor in the Department of Speech-Language Pathology and Audiology at Loyola College, Maryland. She received her bachelor’s degree, summa cum laude from Long Island University in addition to a master’s degree and a Ph.D. from New York University. She is the founder of the Loyola College Speech and Language Down Syndrome Center for Excellence and is the Therapies Editor of Down Syndrome Quarterly. She is also the author of numerous books and articles on the challenges and therapies relative to communication for people with Down syndrome and has been working with families and their children with Down syndrome since 1980. She is especially interested in what we can do to improve speech intelligibility.
Bob Lawhead, MA. Ed., has served as Executive Director of Employment Link, a non-profit agency supporting community integrated employment for people with Down syndrome and other intellectual and developmental disabilities. Bob received his M.A. in Ed./Educational Psychological Studies from the University of Colorado in 1985. He is Past President of APSE: The Network on Employment (previously the Association for Persons in Supported Employment) and presently serves on APSE’s Board of Director and chairs their Public Policy Committee. He has authored Conversion: from Segregated, Sheltered Workshops to Supported Employment, published by APSE in 1996. Bob has promoted regular community employment for people with cognitive disabilities through parent education, systems change consultation and public policy advocacy. He and his wife Anastasia have one child, Jess, who experiences Down syndrome, and is fully included within his neighborhood school.
Dr. McGuire is a Senior Consultant with the Global Down Syndrome Foundation, Denver, CO., and the co-founder and former Director of Psychosocial Service, for 22 years, of the Adult Down Syndrome Center of Lutheran General Hospital (suburban Chicago). The Center served the health and psychosocial needs over 5000 teens and adults since its inception in January of 1992.
Joan Guthrie Medlen is a registered dietitian from Portland, Oregon. Her diverse work includes publishing and editing Disability Solutions through the nonprofit organization Creating Solutions. She is also the author of The Down Syndrome Nutrition Handbook, The Clinical Advisor, Health Literacy & Communication, Healthy Athletes, Health Promotion for Special Olympics, Inc, and serves on many advisory boards. Joan is the mother of two young men, one of whom has Down syndrome, autism, and celiac disease.
Betty Miller Hersey, L.M.S.W., is the Executive Director of Reading & Radio. She was the President of the National Down Syndrome Congress from 1996 through 1999, a co-founder and president of the Down Syndrome Guild of Metropolitan Dallas for which she is currently the Chair for Special Projects and is a Trustee and Secretary of the National Down Syndrome Congress Foundation. Betty earned her B.A. in General Studies from the University of Texas at Dallas and an M.S. in Social Work from the University of Texas at Arlington in 1994. She is licensed L.M.S.W. by the State of Texas. Betty has been a leader, advocate and activist in a wide range of organizations and initiatives supporting people with disabilities, including the Arc and the United Way, both in Texas and nationally and is the recipient of numerous awards for her activities.
Sally R. Shott, M.D. is a pediatric otolaryngologist and professor in the Department of Otolaryngology, Head and Neck Surgery at the University of Cincinnati, Children’s Hospital Medical Center. Dr. Shott earned her M.D. and served her residency at the University of Cincinnati. She is a member of the Down Syndrome Medical Interest Group, as well as a member of the Board of Trustees of the Down Syndrome Association of Greater Cincinnati. Dr. Shott stresses the importance of aggressive treatment for all ear, nose and throat problems seen in children with Down syndrome.
Grace Williams, M.Ed., CCC-SLP, is a speech pathologist and international presenter on assistive technologies who has invested 40 years working with individuals with mental and physical challenges. Grace, who holds a Masters degree in Education and a Certificate of Clinical Competence in Speech-Language Pathology (CCC-SLP), has worked in the Brunswick County, North Carolina, schools and is now in private practice. She is married and has two sons, one of whom has Down syndrome.
Pat Winders, P.T., is a physical therapist who specializes in the gross motor development of children with Down syndrome. She earned her B.S. and P.T. degrees from the University of Florida. Pat is a senior physical therapist at the Kennedy Krieger Institute in Baltimore, Maryland, and is a member of the Down Syndrome Medical Interest Group. She is also the author of the well-known book, Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals.