Jean Phillips-Martinsson (UK) pictured with Dr Andrea Prader
Jean is the parent founder of IPWSO and had an adult son with PWS. Jean lived in Sweden but has retired to live in the UK. 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.
IPWSO Board of Trustees
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.
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.
Lynn Garrick (USA)
Lynn Garrick is the mother of 5 children, including a 13 year old son with Prader-Willi syndrome. She is a Registered nurse with over 25 years of experience.
Lynn has been the nursing supervisor for a large homecare organization, worked in a level 1 trauma hospital on the trauma and neurosurgery floors, provided care coordination for seniors with a county based health plan, and for the past 12 years has been the nurse consultant and program director with AME Community Services, Inc., which is a residential provider celebrating over 25 years in business serving adults and children with Prader- Willi syndrome.
In addition to her professional involvement with AME Community services Inc., She has been a board member of the Minnesota Prader- Willi Syndrome Association for the past 11 years. She has also been a new parent mentor for Prader-Willi syndrome association USA and has given presentations at both the national and international Prader-Willi conferences. She recently co-founded a not for profit organization where persons with disabilities can choose to find meaningful work in a farm and garden setting which was modeled after her recent trip to Germany for an IPWSO conference.
Marcello Schutzer (USA)
Marcello lives in Atlanta with his wife Andrea and his 2 daughters: Giulia, born in 2003 and diagnosed with PWS shortly after birth; and Nina, born in 2008.Marcello has more than 30 years of experience in senior executive finance roles in leading multinational companies and holds a degree in business administration from FGV in Brazil and an MBA with emphasis in Corporate Strategy and Finance from London Business School. Marcello has served as a volunteer for Habitat for Humanity in rural India, in building day care facilities for poor children in Brazil and is currently a Board member of the Prader Willi Syndrome Association in Georgia, USA.
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.
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.
I am 75 years old and a parent of three children. The eldest, Severine, with PWS died in December 2017, aged 47 years. She was living in a residential home and had a full and happy life.
My professional background is as a mechanical engineer. I retired in 2007 and was cofounder in 2017 of the OT4B start-up for the development of an oxytocin based treatment for PWS.
I was involved, with seven other families in the creation of PWF in 1996. I have been active in the association from the beginning and president for nine years. PWF is now a rather large association, gathering directly or indirectly more than half of the families of Prader-Willi syndrome children and well known by professionals and politicians in the field of rare disease and handicap.
I have tried to make families and professionals work together. The “best practice guide” we have built is a good illustration of a collaborative large project. I have set-up with my wife training sessions for caregivers, performing about 20 sessions per year.
The death of my daughter left a terrible void in our life but my commitment to IPWSO is vital for me. She never gave-up, so I will keep going as long as I can.
Maria has been, for the past 15 years, the president of the Polish Prader-Willi Association. During this time, the association successfully cooperated with the Polish Ministry of Health and the Polish Society for Paediatric Endocrinology to establish the National PWS Treatment Programme, which was subsequently extended to adult care. She has a first-hand experience with living with PWS, being a mother of two girls, one of whom (now 17 years old) is diagnosed with this syndrome.She is the Head of Medical Training and Simulation Center at Medical College of University of Warmia and Mazury in Olsztyn, engaged in teaching clinical communication. She is also a vice-president of the Polish Society for Medical Communication, a founding member of Polish Personalized Medicine Coalition, as well as an expert of the Jagiellonian Club Analytical Center in the field of health and social care.
I have had over forty years working, in varying capacities, in the provision of welfare services to children and their families, particularly in statutory child protection and for people with disabilities. In 1997 I was awarded a Churchill Fellowship to research innovative practices in Child Welfare in Europe and North America.
Whilst trained as a Psychologist, I have managed a large district for the Department of Community Services (DoCS) at Liverpool.
Since becoming CEO of Interaction the organisation has grown from a turnover of $6 million to $32 million and from 100 staff to 350 staff. While we provide services to people with an intellectual disability, the services we provide to people with Prader-Willi Syndrome (PWS) differentiate us from other service providers in Australia. I am on the Boards of two Not For Profit organisations and two School Councils in Sydney.
Marguerite Hughes (Ireland)
Marguerite is based in Ireland and has a doctorate in Social Science from University College Cork. Marguerite 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 20 years. Marguerite's first child was born in 2004 and diagnosed with PWS shortly after birth. Prior to becoming IPWSO CEO, Marguerite served on the IPWSO board for 6 years, most recently as IPWSO Vice President from 2016-2019.
Kate Woodcock (UK)
Dr Kate Woodcock is a Senior Lecturer at the Centre for Applied Psychology in the School of Psychology at the University of Birmingham, UK. Her research focuses on young people who face psychological and behavioural difficulties, often those linked to neuro-developmental disorder. Several lines of her research focus specifically on individuals with Prader-Willi syndrome. Kate’s work has examined factors that come together to precipitate behaviours that can be challenging for individuals with Prader-Willi syndrome, such as temper outbursts. Her team is currently engaged in work that applies this knowledge to the development of intervention strategies. For example, caregiver led behavioural support strategies, cognitive training intervention programmes, and early intervention strategies.
Agnes Hoctor (UK)
Communication & Membership Manager
Agnes worked at Cambridge University, UK, alongside Tony Holland, and joined IPWSO initially to organise the 2019 IPWSO Conference in Cuba. She has now joined the IPWSO staff as Communication & Membership Manager. Her background is in communications and campaigns in the health and disability sectors.
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
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
Professional Providers & Caregivers Board
Norbert Hodebeck-Stuntebeck, PhD
Mary K Ziccardi
Hubert Soyer PhD
Director, Regens Wagner
Executive Program Consultant
Root Connections Consultative Services LLC
Oconomowoc, WI, USA
Larry Genstil, PhD
Genstil Institute of Human Behaviour
John Ford PhD
Specialising in behavioural care
Fanny Cortes MD
Clinical Geneticist Rare Diseases Center. Clinica Las Condes Santiago,
Counselor & social worker
PWS Group Home
Leader of the PWS group home, Surava, Switzerland
Family Care Board (FamCare)
Amalia Balart (see biography in the Trustee section)