Professional Advisory Council

The Professional Advisory Council is composed of experts from many fields who work with people who have Down syndrome. One of the Professional Advisory Council ‘s primary functions is to serve as a resource for the National Down Syndrome Congress center staff. When the center gets questions, they have a wealth of knowledge and experience to draw upon to give our members the most accurate up-to-date information. The Professional Advisory Council members also contribute to the Down Syndrome News and website and frequently present at the annual convention.

Currently the Professional Advisory Council is composed of:

  • Adult Issues: Brian Chicoine, M.D.; Dennis McGuire, Ph.D.
  • Communication: Dolley Meyers Ph.D, Sara Rosenfeld-Johnson, M.S., CCC-SLP; Libby Kumin, Ph.D, James MacDonald, Ph.D., CCC-SLP; Grace O. Williams, M.Ed., CCC-SLP
  • Dental: Sindoor Desai, DDS
  • Education: Michaela D’Aquanni, Ph.D.; Mary Falvey; Paula Kluth, Ph.D.
  • Employment: Robert Lawhead
  • Friendship and Inclusive Education: Carol Tashie
  • Legal: Kathleen Marafino JD, Susan Goodman JD
  • Medicine: George Thomas Capone, M.D.; Penny Feldman, M.D.; Sally Shott, M.D.; Marjorie Greenfield, M.D.; Siegfried M. Pueschel, M.D., Ph.D., JD, MPH; Laura Cifra-Bean, M.D., Jose Carlos Florez, M.D., Ph.D.
  • Nutrition: Joan Medlen, RD, LD
  • Occupational Therapy: Maryanne Bruni, BSC OT
  • Physical Therapy: Pat Winders, PT
  • Positive Behavioral Supports: Lewis Jackson, Ph.D.
  • Sexuality: Terri Couwenhoven, M.S., AASECT Sexuality Educator
  • Social Work and Literacy: Betty Hersey, LMSW
  • Supported Living, Day Services, Leisure/Recreation: Pam Walker
  • Transition from School to Adult: Richard Rosenberg
Advisory Council Bios

Maryanne Bruni, BSC, OT, is an occupational therapist specializing in pediatrics. She holds a Bachelor of Science 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 of 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 MD 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. As an American Association of Sex Educators, Counselors and Therapists certified 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, 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.

Mary A. Falvey, Ph.D., is Director of Student Services and a professor at California State University , Los Angeles specializing in teacher training, staff development and systems change with emphasis in supporting students with significant disabilities in inclusive education. Mary received her doctorate in behavioral disabilities and education administration from the University of Wisconsin , Madison and is the author of various books, publications, and presentations across the nation in the area of inclusive education. Her most recent publications are Valuing Your Child with Special Needs and Education in the Inclusive Heterogeneous Education . Dr. Falvey is a member of the State Department of Education and California Teacher Credentialing Advisory Committees and the International TASH Board of Directors. She is a founding board member of Cal TASH, an advocate, consultant, author, and international presenter. Mary and her spouse, Richard L. Rosenberg – also a PAC member – have two sons. Her nephew with Down syndrome lives with them and has been fully included.

Penny Feldman, M.D., is pediatric endocrinologist practicing at Rhode Island Hospital and Hasbro Children’s Hospital, in Providence , Rhode Island and is clinical instructor of pediatrics at the Brown University School of Medicine. Dr. Kadmon earned a Bachelor of Science degree from Cornell University , College of Agriculture and Life Sciences and her M.D. at the Albert Einstein College of Medicine. She was an intern and resident in pediatrics at Babies’ Hospital, Columbia Presbyterian Medical Center in New York and held a Pediatric Endocrinology Fellowship at Hasbro Children’s Hospital, Rhode in Providence . Dr. Kadmon is the author of numerous works on pediatric endocrinology and has presented to national conventions endocrine disorders in children with Down syndrome and prenatal diagnosis of 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.

Susan Goodman, J.D., As Director, Governmental Affairs, Susan Goodman is the National Down Syndrome Congress representative in Washington, DC where she advocates for our families, people with Down syndrome, and people with all manner of disabilities. Susan earned her JD from St. Louis University School of Law, began her advocacy for all children with disabilities in 1975, upon passage of the Individuals with Disabilities Education Act and has authored various articles about disability, advocacy and assistive technology. She is married with three children, one of whom has autism.

Marjorie Greenfield M.D., is an Associate Professor of Obstetrics and Gynecology at the Case School of Medicine and University Hospitals, Cleveland, Ohio. A 1983 graduate of Case Western Reserve University School of Medicine, Marjorie was a resident in Obstetrics and Gynecology residency 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 special-needs girls and women, 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 their son, Dan Post, 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 (2003, Brookes Publishing) and the lead editor of Access to Academics: Critical Approaches to Inclusive Curriculum, Instruction, and Policy (with Doug Biklen & Diana Straut, 2003, Erlbaum Publishing). She has also written several articles and chapters on inclusive schooling. She 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 recognized 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, a master’s degree and her 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. The author of numerous books and articles on the challenges and therapies relative to communication for people with Down syndrome, Dr, Kumin 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 MA 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.

Dennis McGuire, Ph.D., is the Director of Psychological Services at the Adult Down Syndrome Clinic of Lutheran General Hospital. Park Ridge, Illinois. Dennis received his BA from Marquette University, Milwaukee, his MA from the University of Chicago and his PhD from the University of Illinois. He has written widely on the subject of behaviors and psychology affecting people with Down syndrome and is a much sought after presenter at regional and national conferences focused on Down syndrome. Dennis and his wife, who is also a psychologist, have one son.

Joan Guthrie Medlen is a registered dietitian from Portland, OR. 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.

Laura Meyers, Ph.D., is an augmented language development specialist whose focus is developing effective teaching methods using technology to augment spoken and written language development and use. Dr. Myers holds a Ph.D. in linguistics and has conducted post graduate research in mental retardation and developmental disabilities, at the UCLA Neuro-Psychiatric Institute and in child development at UCLA Pediatrics, Child Development. She is Asstistant Research Linguistat UCLA, an adaptive skills trainer, a consultant to school districts and a legal expert witness. Her numerous publications include works on using computers to teach children with Down syndrome spoken and written language skills. Dr. Meyers has carried out three research projects with children and adults with Down syndrome and has conducted collaborative research with Mia Peterson on spoken and written language learning and use by children and adults with Down syndrome.

Betty Miller Hersey, LMSW, is the Executive Director, 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 MS in Social Work (M.S.S. W.) 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.

Siegfried M. Pueschel, M.D., Ph.D., JD, MPH, Dr. Pueschel graduated with a MD, magna cum laude, from the Medical Academy of Duesseldorf in 1960. He was a pediatric resident at Children’s Hospital, Boston, Massachusetts and Montreal Children’s Hospital, Quebec, Canada and a fellow in biochemical genetics and metabolism. In 1967 he earned a Master of Public Health degree from the Harvard School of Public Health, a Doctor of Philosophy in Developmental Psychology from the University of Rhode Island in 1985, and a Doctor of Juris degree from the Southern New England School of Law in 1996.

From 1967 to 1975, Dr. Pueschel worked at the Developmental Evaluation Clinic of Children’s Hospital, Boston. He was the Director of the first Down syndrome program and provided leadership to the PKU and Inborn Errors of Metabolism Program. In 1975, he was appointed Director of the Child Development Center at Rhode Island Hospital, Providence, Rhode Island where he has continued to pursue clinical activities, research and teaching in the fields of developmental disabilities, inborn errors of metabolism and Down syndrome. Dr. Puschel has lectured both nationally and internationally and has authored or co-authored 15 books and has written more than 240 scientific articles.

Dr. Pueschel had a son with Down syndrome, Christian Pueschel, who was an inspiration throughout his 33 years. Chris instilled in him that there should be recognition of the dignity and worth of all people with Down syndrome.

Richard L. Rosenberg, Ph.D., is the Lead Vocational Coordinator, Whittier Union High School District , California and a part-time member of the faculty of California State University , Los Angeles . Richard’s professional expertise includes transition services, inclusive education, supported employment, supported living and person-center planning. He received his Ph.D. in behavioral disabilities and education administration from the University of Wisconsin , Madison and was a post-doctoral fellow at University of California , Santa Barbara , focusing on teacher credential development and mainstreaming as a services option in the 80s.

Richard is deeply involved with a variety of programs affecting people with disabilities, including the professional affiliations of the Whittier area cooperative special education programs of the Whittier Union High School district, California State University, Los Angeles . He also coordinates WorkAbility with Sate Department of Education, the Transition Partnership Project with State Department of Rehabilitation, the State Mentor Initiative Project for Youth with Disabilities, and SSA BRIDGES to Self Sufficiency Project. He is the co-chair of the California Cooperative Section Advisory Board with State Department of Vocational Rehabilitation and member of California Transition Advisory Committee. Finally, Richard is the president of the non-profit board for CHOICESS Community Housing Options. The author of various books, publications, and presentations on transition services, inclusive education and person center planning, Richard and his spouse, Mary A. Falvey – also a PAC member – have two sons. His nephew with Down syndrome lives with the family and has been fully included.

Sara Rosenfeld-Johnson, MS, CCC-SLP, is a Speech-Language Pathologist and Oral-Motor Specialist who did her undergraduate work at Ithaca College and earned her MS at Columbia University in 1972. She is the owner of TalkTools/Innovative Therapists International and an ASHA CEU Approved Provider. Classes are presented on diagnosis and treatment of clients of all ages and ability levels with oral-motor (muscle-based) speech and/or feeding disorders. Sara is the international spokesperson for CHARGE Syndrome and Moebius Syndrome and a nationally recognized presenter for Down syndrome and Cerebral Palsy associations. Rosenfeld-Johnson has published 11 books including works focused on Down syndrome. Sara has worked for 35 years with clients with Down syndrome using oral-motor exercises to diagnose and treat muscle-based speech clarity and feeding disorders. She and her husband Phil Johnson have 3 daughters, Rachael, Lauren (22) and Beth.

Sally R. Shott 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, MED, 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, Jeremy and Rich. Jeremy has Down syndrome while Rich and his wife Kiersten have just become new parents.

Pat Winders, PT, is a physical therapist, who specializes in the gross motor development of children with Down syndrome. She earned her BS and PT degrees from the University of Florida. Pat is a senior physical therapist at the Kennedy Krieger Institute in Baltimore, MD, 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.