IPWSO Boards

HONORARY PRESIDENT

(President, 1991-1998)

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 Prader-Willi Association together with two other families. Jean has written the first chapters of IPWSO's history.

IPWSO Board of Trustees

PRESIDENT

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.

VICE PRESIDENT

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 (26 years old) living with PWS, drives his desire to establish PWS education, advocacy and support services across Australia and around the globe.

SECRETARY

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.

TREASURER

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.

François Besnier

France

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.

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.

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.

Maria Libura

Poland

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.

Marilyn Dumont-Driscoll, MD, PhD (USA)

Co-opted member of the Board

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.

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 daughter with PWS living in the  Regens Wagner Institution in Absberg /Bavaria/Germany.

Craig Moore

Australia

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.

Staff

Marguerite Hughes (Ireland)

Chief Executive Officer

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.

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

Chair

Dan Driscoll, PhD, MD (USA)

University of Florida
Health Sciences Center
Div. Genetics / Dept. of Pediatrics
Gainesville, FL  U.S.A.

Vice Chair

Susanne Blichfeldt, MD (Denmark)

Consultant (Neuropediatrics)
Denmark

Susanne has an adult son with PWS.

Prof. Dr Leopold Curfs, PhD

Dept. of Clinical Genetics
University Maastricht/Academic Hospital
Maastricht, The Netherlands

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
Möhrlistrasse 69
CH-8006 Zürich
Switzerland

Charlotte Hoybye

Senior Consultant, Associate Professor,

Department of Endocrinology, Metabolism and Diabetology, Karolinska University Hospital, Stockholm,

Sweden

Shuan-Pei Lin

Mackay Medical College and National Taipei University of Nursing Sciences, Taiwan · Department of Medicine and Department of Infant and Childhood Care

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

Orthopaedic Surgeon

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.

Janice L. Forster, MD

Child & Adolescent Psychiatrist
Pittsburgh Partnership
Pittsburgh, PA  U.S.A.

Ann O. Scheimann MD, MBA

Assistant Professor of Pediatrics
Johns Hopkins School of Medicine

Baltimore, USA

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

Chair

Norbert Hödebeck-Stuntebeck, PhD

Psychologist

Diakonische Stifung Wittekindshof

Germany

Norbert is a Psychologist, Psychotherapist and a Supervisor, who resides in Bad Oeynhausen, Germany, where he currently serves as Projectmanager Prader-Willi-Syndrome and Projektmanager Adipositas (Obesity) for Diakonische Stiftung Wittekindshof  (a Lutherian foundation in the north west of Germany, in Northrhein-Westfalia).  He received his PhD in 2012 at the University of Eichstätt by a study about the competence of people with Prader-Willi-Syndrome in change of 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. His interest in research is focused on empathy (change of perspective) in PWS and the development and evaluation of training programs. Another field of interest is obesity in people with learning disabilities.

Co-Chair

Mary K Ziccardi

Regional Director

REM

Ohio, USA

Mary K. Ziccardi is a Regional Director at The MENTOR Network in Cleveland, Ohio, where she has been employed for nearly twenty five years. She is responsible for the region of northern Ohio, where over 300 individuals are supported by over 400 employees in a variety of residential, habilitation and vocational programs. Mary has been directly involved in providing services to people with Prader-Willi syndrome for over twenty years. In addition to the five residential programs specifically for people with PWS in Cleveland, she works with PWSA (USA) to provide training and consultations in schools and residential programs throughout the United States.

Patrice Carroll LCSW

Director of PWS Services

Latham Centers

USA

Patrice Carroll is the director  of PWS services for both children and adults at Latham Centers in Massachusetts, USA. Patrice received her MSW from Simmons College, Boston, MA 2008. Patrice is the co-chair of the PWSA USA professional providers advisory board and has been working with children and adults diagnosed with PWS since 2002. Patrice is a co-author of the book Living Healthy with Prader-Willi Syndrome.  In addition to her experience with developing person-centered vocational programming for people with PWS, she has specialized in the management of skin and rectal picking using intensive, non-contingent, sensory stimulation.

Larry Genstil, PhD

Psychologist

Executive Director

Genstil Institute of Human Behaviour

Israel

Larry is Founder and Executive Director of the Genstil Institute Hostel, Mevasseret Zion, Israel. Founded in 1991 the hostel is a large group home serving two populations, one of which is made up of adults with PWS. In addition, he is a Psychologist at the Multi-Disciplinary Clinic for People with PWS, Sha'are Zedek Medical Center, Jerusalem, Israel, where he has worked since 1996.

Neil Gumley

Service Manager

PWS specific facility in Melbourne

Australia

Neil gained a Science/Disability Degree from RMIT University in Melbourne Australia in 2010 while at the same time working at the Department of Health and Human Services specialising in the management of Complex Behavioural Accommodation facilities. In 2014 Neil moved into the Operation Managers role where he was tasked with the Establishment of the First PWS specific accommodation in Melbourne Australia. The facility has now been running successfully for over 5 years. In that time Neil has been appointed to the board of PWS Victoria, was nominated as the Australian Caregivers Delegate for the PPCB and has attended both the Toronto and Cuban Conferences, the latter as a speaker.

Damien Jones, MBA

Senior Manager

Interaction

Australia

Damien has worked as a manager for Interaction Disability Services (Interaction) since 2006. Interaction established Australia’s first accommodation model specifically for adults with PWS in 1992 and now operates a number of PWS houses. Having worked at multiple levels, supporting people with PWS, Damien brings a unique perspective and insight into their needs. Damien has delivered training and numerous workshops on PWS and has contributed to IPWSO’s Famcare articles. Damien will focus on the social aspects of ageing in people with PWS.

Laura Keane

Managing Director

Resilience

Ireland

Based in Ireland, Laura is the Managing Director of Resilience Care, which is a national organisation providing residential and community based services for people with disabilities and Advanced Home Care Services caring for children with complex care needs. She has overall responsibility for the strategic direction and management of Resilience Care. In 2019 Resilience established its first specialist residential service for people with PWS. Laura is a registered Occupational Therapist and has an MSc in Health Services Management from Trinity College Dublin.

Jackie Mallow

Executive Program Consultant

Root Connections Consultative Services LLC

Oconomowoc, WI, USA

Jackie has worked directly with children and adults, who have been dually diagnosed, since 1985. She has extensive training, experience, and education in the areas of behaviour/crisis management, program/staff development, and residential supports. She has worked exclusively with individuals with Prader-Willi syndrome since 1996, providing educational training, behavioural support, guidance and consultation nationwide.  With over thirty years of field experience, she now enjoys her role through Root Connections Consultative Services, LLC as the Executive Program Consultant. Jackie also has several roles with PWSA (USA).

Hubert Soyer PhD

Psychologist

Director, Regens Wagner

Absberg

Germany

Hubert has been General Manager of Regens Wagner Absberg since 1994. Regens Wagner Absberg is an institution for adults with disabilities offering facilities for living and working. The institution has specialist provision for people with Prader-Willi syndrome. The institution works in co-operation with the Zentrum für Neuropsychologie, Trier and the Catholic University of Eichstätt-Ingolstadt for research on the subject of Prader-Willi syndrome.

Family Care Board (Famcare)

CHAIR

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 daughter with PWS living in the  Regens Wagner Institution in Absberg /Bavaria/Germany.

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.

Susanne Blichfeldt, MD (Denmark)

Consultant (Neuropediatrics)
Denmark

Susanne has an adult son with PWS.

Janice L. Forster, MD, USA

Child & Adolescent Psychiatrist
Pittsburgh Partnership
Pittsburgh, PA  U.S.A.

Jackie Gill, UK

Parent of an adult daughter, Jackie is a past IPWSO Board member and has 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.

Linda M. Gourash, MD, USA
Developmental and Behavioral Pediatrician
Pittsburgh Partnership: Specialists for Prader-Willi Syndrome

Tomoko Iwasaki, Japan

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.

Georgina Loughnan, Australia

Based at the Prader-Willi syndrome specialist clinic, Metabolism and Obesity Services at the Royal Prince Alfred Hospital, Camperdown, NSW. Involved with the New South Wales PWS Association and now with Prader-Willi Syndrome Australia as well as many years of work with IPWSO. 

Lesley Robertson​, Australia

I have been fortunate to be able to advocate for PWS, supported by my husband Don and our family. I have been able to attend Conferences and keep up to date. I have been accepted by Doctors and Caregivers as an equal with lived knowledge of the syndrome. It is a lifelong commitment, with many difficulties and problems along the way, but as our other two children would say “what doesn’t break you makes you”. Our son David is a loved member of our extended family and is accepted by them as an equal.

Linda Thornton, New Zealand

Parent of an adult daughter with PWS and extensive experience at an organisational level in the PWS world both from many years with IPWSO and in New Zealand.

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IPWSO,

Douglas House,

18b Trumpington Road,

Cambridge 

CB2 8AH, UK

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Registered as a charity in England & Wales, charity no. 1182873