Board of Trustees

Nick Finer

President and Chair

Nick lives in the UK and is a former honorary professor of clinical medicine at University College London. Nick trained as a clinical academic endocrinologist and over 3 decades developed multidisciplinary obesity services at Guy’s, Luton, Cambridge, and University College London hospitals. From 2016-2022, Nick was Senior Principal Clinical Scientist, Global Medical Affairs, with Novo Nordisk in Denmark. His research on obesity and its related complications, is represented by 200 peer-reviewed papers and reviews, and more than 23 book chapters.

Karin Clarke

Vice-President

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.

Lantz Yap

Secretary

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.

Tünde Liplin

Treasurer

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.

Scott Arant

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.

Patrice Carroll

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. 

Nathalie Kayadjanian

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 Raymond A. Wood Foundation, 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.

Dagmar Kiderlen

Dagmar was born in Germany but has lived for many years in France.  She is a teacher and has a 20-year-old son who has PWS.  Since 2018 Dagmar has represented and supported families and organised family meetings and information sessions in her region in Southern France.  Dagmar speaks English, German, French and Russian. 

Jackie Lodge

Jackie lives in the UK and since April 2023 has been CEO of the UK PWS Association. She has 30 years’ experience working in management roles in the charity sector and has also held various Trustee positions in local and international charities. Jackie has a BA in Psychology and a Master’s degree in Charity Management.

Liane Motta

Liane lives in Brazil and has a 10-year-old daughter with PWS. She is a translator and editor by profession. Liane was a founder member of the PWS Association in Brazil in 2016, and she served as its President from 2021 to late 2024. During this period the Association grew to include over 500 families. Liane is currently an advisor to the Brazilian PWS association. Liane speaks Portuguese and English.

Johana Quinn

Originally from Colombia, I now reside in South Florida with my husband and our two children. My personal background is System Engineer – Computer Science. As a mother of a 13-year-old daughter with Prader-Willi syndrome (PWS), I have cultivated compassion, resilience, empowerment, and the courage to navigate the unique challenges PWS brings. From the moment my daughter was born, I developed a deep passion for helping other families affected by PWS, sharing my experiences to offer support and guidance. I have proudly served on the board of the PWS Colombian Association, working alongside them to organize and deliver International PWS symposiums. My journey has been one of unwavering dedication to my daughter and the PWS community, striving to make a difference in the lives of others.  

Brett Thompson

Brett is the CEO of Interaction Disability Services, located in Bella Vista, NSW. He has held this role for over 4 years, having previously worked for over 32 years in the public health system in NSW and SA. Brett has been a member of the NSW National Disability Services State Committee for the last 3 years and has been one of two vice chairs for the last year. Brett was successful re-elected to the State Committee continuing his commitment to challenging the status quo to achieve the best outcomes for participants, families and service providers. 

Brett’s goal to create a bigger impact for more people continues to inspire his interest in joining committees of influence. One of Brett’s learnings from his many years working in the public health system is that sharing personal experiences of best practice and innovation is the only way to deliver sustainable best practice for the end users, participants, clients, customers or patients. The global work of the International Prader-Willi Syndrome Organisation in supporting people with PWS, their families and professionals and their commitment to progressing best practice is an area Brett is keen to assist in developing further. 

Brett holds a Bachelor of Applied Science (Nutrition), a Post Graduate Diploma in Dietetics and a Master of Business Administration. 

Brett has a solid understanding and wealth of experience in all aspects of governance and dealings with bureaucracy and politics, though his passion is working with people.  

Honorary President

Staff

Advisers

Clinical and Scientific Advisory Board

Professional Providers and Caregivers Board

Famcare Board