( President, 1991-1998)
Jean Phillips-Martinsson (UK) pictured with Dr Andrea Prader
Jean is the parent founder of IPWSO and has an adult son with PWS. She divides her time between Sweden where her son lives, and the UK where she has retired. Jean has written an introductory history of IPWSO. In 1986, two years after her son was diagnosed at the age of 14, she co-founded the Swedish PW Association together with two other families. Jean has written the first chapters of IPWSO's history.
Anthony J. Holland, MD, CBE (United Kingdom)
Health Foundation Chair in Learning Disabilities
Tony is a clinical and academic psychiatrist specialising in the field of intellectual disabilities. Since 2002 he has led the Cambridge Intellectual and Developmental Disabilities Research Group in the Department of Psychiatry at the University of Cambridge, UK. He has been the psychiatric advisor to PWSA UK and is now their Patron. With colleagues he has undertaken extensive research, particularly into the hyperphagia and the behavioural and mental health problems commonly associated with having PWS. His research has been published in academic and practice-based journals and he has been involved in the preparation of guidance for IPWSO and PWSA UK. He has attended all of the IPWSO International conferences and was one of the organisers for the IPWSO conference held in Cambridge in 2012. In 2015 he was awarded a CBE in the Queen's Birthday Honours List for services to psychiatry.
Marilyn Dumont-Driscoll, MD, PhD (USA)
Marilyn has a faculty practice with patients with have childhood obesity, PWS, sleep disorders or learning disabilities. A founding member of Academic Pediatric Association’s Continuity Clinic Research Network, the HRSA-funded Genetics Initiative in Primary Care Education Advisory Committee, the APA representative to the March of Dimes Genetics in Practice Initiative, the NIH Secretary’s Advisory Committee on Genetic Testing Panel and the Pediatric Academic Societies Executive Committee
Mariona Nadal (Spain)
Fundación SPW, Spain
Mariona is a senior software engineer. She has been a volunteer on her local PWS association for more than 10 years before joining IPWSO board, working on both management and activities. Mariona's younger brother was born in 1998 and diagnosed with PWS several years later. Since then, the whole family has worked with PWS, spreading knowledge throughout Spanish speaking countries.
Marguerite Hughes (Ireland)
Marguerite is based in Ireland and has held senior voluntary and paid positions in non-profit organisations in sectors including international development, patient support and advocacy, homelessness, and educational advocacy for over 15 years. In 2012 Marguerite graduated with a doctorate in Social Science based on her research into media reporting of legitimacy and accountability of non-governmental organisations. Marguerite's first child was born in 2004 and diagnosed with PWS shortly after birth.
Hubert Soyer, PhD (Germany)
Psychologist and General Manager of Regens Wagner Absberg (a large residential and supported-working institution for adults with disabilities including many with PWS), Hubert has been very involved with organizing and developing the Professional Provider Caregiver Board (PPCB),
Georgina Loughnan (Australia)
Physiotherapist - Metabolism & Obesity Services
and the Prader-Willi Syndrome Clinic,
Royal Prince Alfred Hospital, Camperdown, NSW Australia
Georgina has worked with obese people with disabilities for many years and established a public hospital-based Prader-Willi syndrome clinic for adolescents and adults 25 years ago. She is an executive member of the NSW PWS Association in Australia and her expertise covers physical activity and nutrition for healthy lifestyles.
Amalia Balart (Chile)
Amalia Balart is a Teacher of English and Teacher for Special Needs. Head of Junior Dept at The Newland School in Chile for the past 26 years and a graduate of Master in Special Education, she has worked as Bilingual Therapist to help children with attention deficit disorder, learning disabilities and poor executive functions. She is the mother of a 35 year old daughter with PWS.
June-Anne Gold MD (USA)
Associate Professor in the Pediatrics Department in Clinical Genetics and Metabolic Genetics at Loma Linda University School of Medicine and HS Clinical Associate Professor in the Department of Pediatrics and Division of Genetics and Genomics at University California Irvine. Trained in London and Oxford in Pediatrics and genetics. She relocated to the USA in 2004.
Verena Gutmann (Austria)
Educational Head of Department responsible for the Educational Management of 100 youngsters from 14-20 years. Also responsible for the formation of the Austrian PWS Association and chairperson for 10 years. Verena was an auditor for IPWSO before joining the board. She has a 26 yr old daughter with PWS living in the Regens Wagner Instiution in Absberg /Bavaria/Germany.
James O'Brien (Australia)
Underscored by a powerful desire to maximize outcomes for all people living with PWS, James' education, management and operating experience spans national and international charities, special school settings and disability services.
James holds numerous volunteer appointments, including:
Director, International Prader-Willi Syndrome Organisation
Council Member, RADE Global Advocacy Leadership Council, Global Genes
President, Prader-Willi Syndrome Australia
Founding Director, PWS Better Living Foundation
James’ love for his two children, including his son Ashley (26yo) living with PWS, drives his desire to establish PWS education, advocacy and support services across Australia and around the globe.
Linda Thornton (New Zealand)
Linda founded the PWSA (New Zealand) in 1989, five years after the birth of her daughter with PWS. She was on the inaugural IPWSO board and has since served a further term before taking up her current position. She wrote much of the NZ publications and designed caregiver training programmes and is a Winston Churchill Scholar. In 1999 she received a Queen's Service Medal for her work with PWS in New Zealand
Agnes Hoctor (UK)
Communication & Membership Manager
Agnes worked at Cambridge University, UK, alongside Tony Holland, and became Administrator for the 2019 IPWSO Conference in Cuba. She has now joined IPWSO staff in the new position of Communication & Membership Manager
Clinical & Scientific Advisory Board
Dan Driscoll, PhD, MD (USA)
University of Florida
Health Sciences Center
Div. Genetics / Dept. of Pediatrics
Gainesville, FL U.S.A.
Maithe Tauber, MD
Professor of Pediatrics, University of Toulouse She directs the Reference Centre for Prader-Willi syndrome in France and is the Chair of the Scientific Council of Prader-Willi France. Her research includes oxytocin in PWS
Urs Eiholzer, MD
Associated Professor and Head
PEZZ Center for Pediatric Endocrinology
Senior Consultant, Associate Professor,
Department of Endocrinology, Metabolism and Diabetology, Karolinska University Hospital, Stockholm,
Susanne Blichfeldt, MD (Denmark)
Susanne has an adult son with PWS.
Moris A. Angulo
Director of Medical Genetics
Assistant Director of Pediatric Endocrinolgy
Winthrop University Hospital
Mineola, NY U.S.A.
Suzanne Cassidy, MD
Medical genetics doctor in Sausalito, California and is affiliated with UCSF Medical Center.
A founding member of IPWSO and Past President, Susie is also a serving board member of PWSA USA
Harold van Bosse
Shriner Hospital, Boston. Also on the board of directors for Arthrogryposis Multiplex Congenita Support, Inc. and A Leg to Stand On, he a member of the PWSA (USA) Clinical Advisory board. He is also an associate professor of orthopaedics at Temple University.
Prof. Dr Leopold Curfs, PhD
Dept. of Clinical Genetics
University Maastricht/Academic Hospital
Maastricht, The Netherlands
Janice L. Forster, MD
Child & Adolescent Psychiatrist
Pittsburgh, PA U.S.A.
Ann O. Scheimann MD, MBA
Assistant Professor of Pediatrics
Johns Hopkins School of Medicine
Professional Provider & Caregiver Board
Norbert Hodebeck-Stuntebeck, PhD
Executive Program Consultant
Root Connections Consultative Services LLC
Oconomowoc, WI, USA
Fanny Cortes MD
Clinical Geneticist Rare Diseases Center. Clinica Las Condes Santiago,
Mary K Ziccardi
Larry Genstil, PhD
Genstil Institute of Human Behaviour
Counselor & social worker
PWS Group Home
Hubert Soyer PhD
Director, Regens Wagner
Specialising in behavioural care
Leader of the PWS group home, Surava, Switzerland