Board of Trustees
President and Chair
Emeritus Professor of Psychiatry, Department of Psychiatry, University of Cambridge. Tony is a clinical and academic psychiatrist specialising in the field of intellectual disabilities. From 2002 until his retirement in 2017 he 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. Tony has been the President of IPWSO since 2016.
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 has been an IPWSO Trustee since 2019.
Lynn is the mother of 5 children, the youngest was diagnosed with PWS as an infant. She is a registered nurse and works as a program director for AME Community Services which is a residential provider for those living with PWS. 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 15 years, serves as the medical and research coordinator for PWSA| USA and is on the board of trustees for IPWSO as well as chairing our PPCB.
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 has been an IPWSO Trustee since 2019.
Scott lives in Dunwoody with his wife Deborah. They have three children Charlie, Jack and Ally (w/ PWS). Scott founded American Health Imaging (AHI) in 1998 and served as its CEO for 24 years before semi-retiring in 2022. In that time AHI became the largest provider of high-tech radiological imaging in the southeast while employing nearly 500 people. Scott serves as a Director on several healthcare-oriented boards: US Radiology Specialists, Foundation for Prader Willi Research, PWS Association-Georgia, Physicians Care Clinic, NeuroScience Foundation, Association for Quality Imaging and The Texas IDTF Association. He graduated from Auburn University’s business school in 1991. In his off time Scott enjoys spending time with his family at the lake, hunting, fishing, golfing and working on a new PWS Foundation known as C-15 Foundation dedicated to a Work, Live, Play and Research campus. Scott has been an IPWSO Trustee since 2022.
Karin Clarke is the Chairperson of the Prader-Willi Syndrome Support Group of South Africa. She graduated with a Bachelor’s degree in economics and psychology from the University of Cape Town (UCT). She worked in Marketing Research, at Kantar TNS until her daughter with PWS was 2 years old. In 2011 when her daughter was four years old and was finally diagnosed with PWS she joined the PWS Association of South Africa. In 2015 she started the Facebook page for PWS SA and became more involved. In 2017 she became the Chairperson and the structure was changed to a support group under Rare Diseases SA (RDSA). She works with RDSA as a rare ambassador for PWS. The three main areas of focus for the support group are support, education and advocacy. The core form of support is the WhatsApp group due to the large geographical distances in South Africa. Due to the very low levels of diagnosis of PWS elsewhere in Africa families from other southern and central African countries are welcomed to join PWS SA as there are no support groups for PWS in southern and central Africa. Connections are being made through Rare-Africa (also predominantly run by RDSA) to educate on PWS elsewhere in Africa. Karin has been a co-opted Trustee of IPWSO since 2022.
I live in Quito, Ecuador. I am the mother of a 4-year-old boy who was diagnosed with SP. For me, it was hard to know that my son had this medical condition, but thanks to the support of my husband and family we have succeeded with great strength all the problems that arise. I established the Prader Willi Ecuador Foundation and am working to develop it. Gaby has been an IPWSO Trustee since 2022.
Nathalie Kayadjanian, Ph.D is an expert in translational biomedical research for rare diseases with extensive experience in academia, biotech, and the pharmaceutical industry in Europe and in the USA. For the past several years, Nathalie has occupied top management positions in patient-driven non-profit research organizations including the Foundation for Prader-Willi Research, the French Association for Neuro-muscular disorders and the Amyotrophic Lateral Sclerosis Association where she developed and implemented strategies to accelerate the development of innovative therapies for rare diseases. She received her Ph.D in Neuroscience from the University Pierre and Marie Curie in Paris and did a postdoctoral training at the Salk Institute in La Jolla, CA. Nathalie has been a co-opted Trustee of IPWSO since 2022.
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 has been an IPWSO Trustee since 2022.
Tünde Liplin is a mother of 2 children. Her firstborn child, a son, Levente who lives with PWS was born in 2011, and she has a daughter, Panna, who was born in 2015. Her professional background is as a financial analyst. After she graduated, Tünde worked hard to attain her role as lead Financial Analyst for 17 years in a multinational company. But as a mother who cares for a child with special needs, she decided to give up her business career and concentrate full time on her family and building a strong PWS organization in Hungary. She was involved, with 10 other families, in the creation of the Hungarian PWS Association in 2019. She is currently the president of the Association. Her work consists of arranging official affairs, writing applications, organizing and managing volunteer work, and also organizing different types of parent meetings and keeping in touch with medical organizations. Her personal objective is to create an information database in the Hungarian language, and her long term goal to establish the first Hungarian PWS residential home for adults. Tünde has been an IPWSO Trustee since 2022.
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 has been an IPWSO Trustee since 2019.
Lantz Yap is a 2 term exco and life member of the PWS Association in Malaysia. He lives in the capital city of Kuala Lumpur with his wife, Jeannie and two children. His son, Ken aged 26 was diagnosed with PWS at birth. He represented Malaysia in bidding for the IPWSO conference in Cuba in 2019. During the Covid-19 pandemic in 2020, he conceptualized the inaugural two day PWS National Webinar which impacted over 200 participants from 12 countries focusing on building a supportive allied health network including funding and sponsorship as well. In the following year, Lantz took the role as Head of Marketing of the 5th Asia-Pacific PWS Virtual Conference in 2021, jointly organized by four national PWS Associations of Malaysia, Australia, New Zealand and Thailand respectively. Lantz has operated a strategic marketing consultancy company since the mid 90’s that collaborates with international universities in the areas of media, event management, youth development and student services. As part of his social contribution, he continues to tap on opportunities to engage with the tertiary education sector to promote wider studies and research focusing on diversity and inclusion within the rare diseases space. His aspiration is to grow and scale-up a social enterprise business model that will embrace the employability of adults with PWS so that it can enrich and create purpose in their lives. For a start, he hopes to bridge the information gap in Asia by increasing PWS advocacy in this region. He believes in IPWSO’s long term vision and hopes that his contribution will add value to IPWSO’s strategic goals. Lantz has been an IPWSO Trustee since 2022.
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