Advisers

Amalia Balart

Amalia is mother to an adult woman with PWS. She is Director of Centro Crecer, a day care center for young and adult people with special needs. Amalia was an IPWSO Trustee from 2016-2022, during which time she formed the Latin American network of specialists in PWS and provided mentorship to countries that wanted to form their own national associations in the region. She also created the Chilean PWS network of families throughout the country. 

François Besnier

I am 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 co-founder 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. I now have three years’ experience as a Trustee with IPWSO and am very motivated to commit to another three. François was an IPWSO Trustee from 2019-2025.

Gary Brennan

Gary was a member of the planning committee for the 2022 IPWSO international conference. He joined PWSAI in May 2019 as the association’s first employee and is currently the National Development Manager. He came to the role with twelve years’ experience in the social care disability sector, eight of which were in residential care supporting adults with Prader-Willi syndrome in a variety of roles from care worker to line manager and subject matter expert in managing behaviours. He is also a member of Ireland’s Disability Participation and Consultation Network (DPC Network) established by the Department of Children, Equality, Disability, Integration and Youth (DCEDIY) with the aim of ensuring that persons with disabilities will be heard directly when the Government makes decisions on policies and laws relating to disability and other important issues. Gary’s remit as Development Manager is to develop a strong foundation within PWSAI from which the future of PWS awareness, support and services provision can advance.

Suzanne Cassidy

Member, IPWSO Clinical and Scientific Advisory Board. Suzanne is a medical genetics doctor in Sausalito, California and is affiliated with UCSF Medical Center. She was a founding member of IPWSO and Past President, she is also a serving board member of PWSA | USA.

Elizabeth Fistein

Elizabeth is a psychiatrist specialising in the interface between law and mental health services. She sits as a medical member of the First Tier Tribunal (Mental Health) for England and works at the University of Cambridge where she teaches and researches in the fields of medical law and medical ethics. She leads the Clinical Ethics and Law Theme at the School of Clinical Medicine and is an Associate of the Centre for Law, Medicine & Life Sciences in the Faculty of Law. Elizabeth is interested in ways to operationalise supported decision-making by people with disabilities.

Joan Gardner

Parent, Philanthropist, fundraiser, and conference adviser. Joan has served as an adviser and committee member of PWSA | USA and IPWSO. Joan is the Co-Founder of Friends of IPWSO (USA).

Jackie Gill

Parent of an adult daughter, Jackie is a past IPWSO Board member and worked with PWSA UK for over 20 years, specialising in writing and producing information, including the UK PWS Journey, and website articles for parents, people with PWS and professional carers.

Barbara Goff

Educational and Crisis Consultant, PWSA | USA. Barbara provides consultation to families and schools on a variety of matters pertaining to students with Prader-Willi syndrome.

Tony Goldstone

Tony is an endocrinologist and clinical researcher. His areas of expertise include hormonal control of appetite, neuroendocrine, hypothalamic and metabolic abnormalities in obesity and Prader-Willi syndrome, particularly investigating the causes of hyperphagia, through pre-clinical, clinical, post-mortem, genetic, interventional, fat and brain imaging studies.

David Gordon

Legal Adviser to IPWSO for 20 years and parent of a daughter with PWS.

Janalee Heinemann

Parent and Medical Health Adviser with over 25 years experience of PWS. Janalee is a past CEO of  PWSA | USA, and past Vice Chairperson of IPWSO.

Norbert Hödebeck-Stuntebeck

Dr Norbert Hödebeck-Stuntebeck is a Psychologist, Psychotherapist, and a Supervisor, who resides in Bad Oeynhausen, Germany, where he served for 30 years as Project Manager PWS and Project Manager Adipositas (Obesity) for a large non-profit foundation in the northwest of Germany, in Northrhein-Westfalia. Today he leads the PWS InterNational Institut. He received his PhD in 2012 at the University of Eichstätt from a study about the competence of people with PWS in change of emotional perspective (empathy). Since 1996 he has been responsible for the development and differentiation of support for people with PWS of all ages and in different fields of living, working, school and training programs. He was for 11 years the chair of IPWSO’s Professional Providers and Caregivers Board (PPCB) and is today a member of PPCB and was the (co)organizer of all IPWSO’s caregiver conferences since the first in Romania in 2007. Since 2015 he has been the CEO of the Prader-Willi-Syndrom Institute Germany (PWS-ID). His interest in research is focused on empathy in PWS and the development and evaluation of training programs. Another field of interest is obesity.

Anthony Holland

Tony Holland trained in Medicine at University College and University College Hospital, London, qualifying in 1973. After some years in General Medicine, he trained in Psychiatry at the Maudsley Hospital and Institute of Psychiatry in London. From 1992 to 2002 he held a University Lecturer’s post in the Section of Developmental Psychiatry in the University of Cambridge, and in 2002 was awarded the Health Foundation Chair in Learning (Intellectual) Disability establishing the Cambridge Intellectual and Developmental Disabilities Research Group (www.CIDDRG.org.uk). His specific research interests include the eating, behavioural and mental health problems associated with having Prader-Willi syndrome (PWS). With colleagues he has published research extensively on these topics in academic and practice-based journals. He is Patron of the UK PWS Association and from 2016-2025 was the President of IPWSO. Since October 2015 he has held an Emeritus position at the University of Cambridge.

Engela Honey

Engela is a doctor working in Paediatrics, Obstetrics and Gynaecology. She is also involved in pre- and postgraduate training of Genetics students. She has expertise in behavioural problems in individuals with an underlying genetic disorder especially Prader-Willi syndrome.

Brian Hughes

Member of the Advisory Group on “Research on specialist services for people with PWS”. Brian Hughes is Professor of Psychology at the University of Galway, Ireland. He is a specialist in stress psychophysiology, health psychology, and research methods. He has conducted extensive research into the ways human cardiovascular responses habituate during repeated or sustained stress exposure, helping to explain how some people are resilient to the long-term health effects of chronic stress. He has also conducted work with various patient groups, examining their experiences of medical and social care. He is a parent of a teenage son who has Prader-Willi syndrome.

Marguerite Hughes

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 more than 20 years. 

Marguerite’s first child was born in 2004 and diagnosed with PWS shortly after birth. Marguerite served on the IPWSO board for 6 years, most recently as IPWSO Vice President from 2016-2019, and was IPWSO’s CEO from 2019-2025. 

Tomoko Iwasaki

Formerly an English teacher at a university but now working as a medical translator. Tomoko works closely with PWSA Japan to translate or talk in public to distribute necessary information. Her daughter with PWS passed away (infant death), but Tomoko is still an active member of the PWS community.

Svetlana Labun

Ph.D., adult education, Catholic University of Eichstätt-Ingolstadt, 2004. Studies of German and English at the Novosibirsk State Pedagogical University, 1995. Department Manager of special services for 73 people with Prader-Willi Syndrome at Regens Wagner Absberg from 2007 till 2021. Regens Wagner Absberg is an institution for adult people with disabilities offering facilities for living and working. For 20 years the institution has offered a special treatment for people with Prader-Willi Syndrome. Since this time there is cooperation with the Zentrum für Neuropsychologie – Trier and the Catholic University of Eichstätt-Ingolstadt for research on the subject of Prader-Willi Syndrome. Since 2022 Department Manager of the Vocational Training Centre for People with Mental Illness (BTZ) in Nuremberg, which belongs to the Development and Vocational Centers (bfz) of the Bavarian Employers. Associated with IPWSO since the 2007 Conference in Cluj and participant in all subsequent IPWSO conferences. Actively involved as a presenter at the conferences in Toronto and Havana. In addition, together with Dr. Hubert Soyer and Dr. Norbert Hödebeck-Stuntebeck, preparing and organizing the international Caregivers Conferences 2018 in Munich, 2012 in Wildbad Kreuth, 2009 and 2008 in Herne. Coach for de-escalation and management of conflicts. Svetlana was an IPWSO Trustee from 2022-2025.

Maria Libura

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 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. Maria was an IPWSO Trustee from 2019-2022.

Mark Lister

Member of the Advisory Group on “Research on specialist services for people with PWS”. Mark Lister is a Board Certified Assistant Behaviour Analyst who has 30 years of experience working with individuals with Prader-Willi syndrome, designing and managing, both residential and behaviour management programs. Mark was one of the founders of the Arc of Alachua County’s PWS residential program in Florida, USA. Currently the Arc is serving 65 individuals with PWS and is the only program using the principles of applied behaviour analysis to ameliorate problem behaviour and teach life skills necessary to live successfully with PWS.

James Loker

Pediatric Cardiology. Bronson Healthcare, Kalamazoo, USA, James’ speciality is in gastrointestinal health in PWS.

Georgina Loughnan

Member, IPWSO Famcare Board. Georgina is based at the Prader-Willi syndrome specialist clinic, Metabolism and Obesity Services at the Royal Prince Alfred Hospital, Camperdown, NSW, Australia. She is involved with the New South Wales PWS Association and now with Prader-Willi Syndrome Australia. Georgina has worked with IPWSO for many years through the Famcare Committee as well as being a former member of the IPWSO Board of Trustees.

Esther Maina

Esther is a Medical and Molecular Geneticist from Kenya. Esther spent part of her postdoctoral experience working in the UK on the molecular genetics of PWS. Upon returning home to Kenya, she found that there were no documented cases of confirmed PWS cases in Kenya or even in the greater East African region. To that end she decided to approach Kenyan pediatricians with a questionnaire on the diagnosis of a PWS baby and the management therein. Since then her work and contacts in the PWS community have further developed.

Craig Moore

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. Whilst trained as a Psychologist, I have managed a large district for the Department of Community Services (DoCS) at Liverpool. I subsequently became the state of NSW’s Director for Adoption and Permanent Care. I was the CEO of Interaction for over 15 years. Interaction provides services to people with an intellectual disability. It also has a specialty for providing services for people with Prader-Willi Syndrome (PWS). It established the first specific accommodation program for people with PWS in 1995. In 1997 I was awarded a Churchill Fellowship to research innovative practices in Child Welfare in Europe and North America. I have commenced a PhD in Child Welfare and I sit on Boards of three Not For Profit organisations and two School Councils in Australia. Craig was an IPWSO trustee from 2019-2025.

James O’Brien

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: Council Member, RARE 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, living with PWS, drives his desire to establish PWS education, advocacy and support services across Australia and around the globe. James was an IPWSO Trustee from 2016-2022 as well as holding the role of Vice-President.

Colin Pearson

A retired solicitor, Colin assists IPWSO on constitutional and English law matters. He is a long-standing friend of a family with a daughter with PWS.

Molelekeng Sethuntsa

Dr Molelekeng Sethuntsa is a Principal Clinical Psychologist and Head of the Psychology Unit at Tembisa Provincial Tertiary Hospital, in Gauteng Province, South Africa. She has been practising as a clinical psychologist for 10 years. She was conferred her doctoral degree in psychology from the University of South Africa (UNISA) in 2018. Her PHD study was entitled: The development of a therapeutic approach for the treatment of individuals with Prader-Willi syndrome and their primary caregivers. She has an interest in health psychology/ medical psychology with a specific focus on genetic disorders.

Ellie Silberstein

Parent of an adult daughter with PWS and founder of the Argentinian PWS Association. Ellie was also a past Vice President of IPWSO and has been a long time advocate for families in Latin America where there is a child with PWS.

Marcello Schutzer

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. Marcello was an IPWSO Trustee from 2019-2022.

Michelle Torbert

Michelle and her Husband Tommy have been married for almost 38 years and have 4 grown sons, their daughter Leslie who is 26 years old with PWS and 4 grandchildren. They own a farming and produce company in which all their sons are employed.

Michelle has served on the board of PWSA/USA for 12 years, 3 of those in which she was board chair. She also is on the board of the Florida chapter for Prader Willi syndrome in which she was president for 8 years. Michelle has been on the board for Friends of IPWSO since it’s inception and is now President. She is also the Parent delegate to IPWSO for PWSA/USA. Michelle has served as co-chair for two PWSA/USA National conventions and presently serves on the Advocacy, Research and Finance committees.

Prior to having her children, Michelle served as a police officer/sergeant for the Homestead Police Department for 10 years. She has also served on the local hospital fundraising committee, Red Cross, Little Angels Foundation and her church board.

Michelle’s passion lies with Prader Willi syndrome both Nationally and Internationally.

Joyce Whittington

Chartered Psychologist, Cambridge Intellectual and Developmental Disabilities Research Group, University of Cambridge. Joyce has published many research papers lookin at aspects of Prader-Willi Syndrome (PWS), especially cognition and behaviour and how this relates to the genetic abnormalities. Joyce produces the quarterly summary of PWS journal articles in collaboration with the Clinical and Scientific Advisory Board.

Kate Woodcock

Dr Kate Woodcock is a Reader in Applied Clinical Psychology 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. Kate was an IPWSO Trustee from 2019-2025.

Honorary President

Board of Trustees

Staff

Clinical and Scientific Advisory Board

Professional Providers and Caregivers Board

Famcare Board