About Us

The International Down Syndrome Societal Services and Supports Working Group

Amy Torres

Program Manager, Massachusetts General Hospital Down Syndrome Program (Boston, MA, USA)

Ana Cláudia Brandão

Down Syndrome Clinic Physician, Hospital Israelita Albert Einstein (São Paulo, Brazil)

Allergist and Immunologist, Hospital Israelita Albert Einstein (São Paulo, Brazil)

Andrew Boys

Executive Director, Down Syndrome International (Exmouth, England)

Angus Graham

Parent of a child with Down syndrome

Director and past Chairman, Down Syndrome Australia (North Melbourne, Australia)

Bhavani Sriram

Neonatologist

Co-founder, MINDS Developmental Disabilities Medical Clinic (Singapore)

Vice President, Asia-Pacific Down Syndrome Federation (Chennai, India)

Medical Advisor, Down Syndrome Association (Singapore)

Brian Skotko, MD, MPP

Has a sibling with Down syndrome

Director, Massachusetts General Hospital Down Syndrome Program (Boston, MA, USA)

Geneticist, Massachusetts General Hospital (Boston, MA, USA)

Honorary Board of Directors, Massachusetts Down Syndrome Congress (Burlington, MA, USA)

Professional Advisory Committee, National Center for Prenatal and Postnatal Down Syndrome Resources (Lexington, KY, USA)

Consultant, Gerson Lehrman Group (New York City, NY, USA)

Author: Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters and Common Threads: Celebrating Life with Down Syndrome

Research funding from: F. Hoffmann-La Roche, Inc., AC Immune, and LuMind Research Down Syndrome Foundation to conduct clinical trials for people with Down syndrome

Brian Takashi Hooper, BA

Parent of a child with Down syndrome

Member, Acceptions, (Koto City, Tokyo, Japan)

Software Engineer

Dan Kats, MD

Pediatrician, Massachusetts General Hospital for Children (Boston, MA, USA)

Darryl Steff

Parent of a child with Down syndrome

Chief Executive Officer, Down Syndrome Australia (Melbourne, Australia)

Eduardo Maria Moreno Vivot, MD

Pediatrician, Domingo Savio & Lirios del Talar (Buenos Aires, Argentina)

Medical Advisor, Asociación síndrome de Down de la República Argentina (Buenos Aires, Argentina)

Medical Advisor, Fundacion Down Formosa (Provincia de Formosa, Argentina)

Medical Advisor, Fundacion Down San Rafael (Provincia de Mendoza, Argentina)

Medical Advisor, Colectivo Down Perú (Lima, Peru)

Medical Advisor, Asociación Down del Uruguay (Montevideo, Uruguay)

Scientific Advisor, la Fundación Down21 Chile (Santiago, Chile)

Scientific Committee Member, Federación Iberoamericana de Sindrome de Down (Madrid, Spain)

Ellen Skladzien, PhD

Past CEO, Down Syndrome Australia (North Melbourne, Australia)

Researcher

Frank Buckley

Has a sibling with Down syndrome

CEO, Down Syndrome Education International (Cumbria, UK)

CEO/President, Down Syndrome Education USA (Irvine, California, USA)

Gert de Graaf, PhD

Parent of a daughter with Down syndrome, who passed away in 2005 at the age of 15

Scientific and Educational Officer, Dutch Down Syndrome Foundation, (Meppel, The Netherlands)

Researcher and Epidemiologist

Helen Powell

Programme Manager, Down Syndrome International (Devon, UK)

Irma Iglesias Zuazola

President, Federación Iberoamericana de Sindrome de Down (Madrid, Spain)

President, la Fundación Down21 Chile (Santiago, Chile)

Karen Donelan, ScD, EdM

Stuart H. Altman Chair in U.S.Health Policy, Brandeis University (Waltham, MA, USA)

Senior Scientist, Health Policy Research Center, The Mongan Institute, Massachusetts General Hospital (Boston, MA, USA)

Kavita Krell, BA

Past Clinical Research Coordinator, Massachusetts General Hospital Down Syndrome Program (Boston, MA, USA)

Kelsey Haugen, BA

Has a sibling with Down syndrome

Past Clinical Research Coordinator, Massachusetts General Hospital Down Syndrome Program (Boston, MA, USA)

Nathan Rowe, MA

Had a sibling with an intellectual disability

Programme Director, Down Syndrome International (Devon, UK)

Rekha Ramachandran, PhD

Co-founder, Down Syndrome Federation of India (Chennai, Tamil Nadu, India)

President, the Down Syndrome Association of India (Tamil Nadu chapter) (Chennai, Tamil Nadu, India)

Co-founder and Chairperson, Mathru Mandir (Chennai, Tamil Nadu, India)

Rose Mordi

Parent of a child with Down syndrome

President and Founder, Down Syndrome Foundation Nigeria (Lagos, Nigeria)

Stephanie Santoro, MD

Director of Quality Improvement Research, Massachusetts General Hospital Down Syndrome Program (Boston, MA, USA)

Geneticist, Massachusetts General Hospital (Boston, MA, USA)

Tania Mikhailenko (Тетяна Михайленко)

Parent of a child with Down syndrome

Vice President, European Down Syndrome Association (Brussels, Belgium)

Country Director, Best Buddies Ukraine (Kyiv, Ukraine)

International Liaison, Ukrainian Charitable Down Syndrome Organization (Kyiv, Ukraine)

Vasiliki Patsiogiannis, MPH, CPH

Past Clinical Research Coordinator, Massachusetts General Hospital Down Syndrome Program (Boston, MA, USA)

Acknowledgements

We would like to thank Down Syndrome International for distributing the survey to their member organizations, as well as all of the participants for their responses. We are especially grateful for the participation of our pilot organizations: Karachi Down Syndrome Program (Pakistan), Jonathan Center (Albania), CoorDown (Italy), National Down Syndrome Congress (USA), Down Syndrome South Africa (South Africa), Down's Syndrome Scotland (Scotland), and la Asociación Síndrome de Down de la República Argentina (Argentina).