Famcare Board

Verena Gutmann

Chair

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. Verena was an IPWSO Trustee from 2016-2022.

Amalia Balart

Amalia is a Masters graduate in Special Education and has worked as a Bilingual Therapist to help children with attention deficit disorder, poor executive function and learning disabilities. She worked for 26 years as Head of Juniors at The Newland School in Chile. Amalia is a member of the Board of the Chilean PWS National Association. She created the Chilean PWS network of families throughout the country, organising them by zones, each with a Coordinator that reports to the central Board. She is one of the authors of the book “Síndrome Prader-Willi Guía de Apoyo y Recetas para Celebrar de Manera Saludable”. She founded Corporación Señales, a non-profit organisation to provide schooling, training and labour opportunities for people with special needs. Amalia is mother to an adult woman with PWS. Amalia has been working closely with colleagues in Latin America through the Red de Especialistas Latinoamericanos Síndrome de Prader Willi, to strengthen the bonds between the PWS associations in the region and to support smaller PWS groups to develop and grow. Amalia was an IPWSO Trustee from 2016-2022.

Susanne Blichfeldt

Consultant (Neuropediatrics). Susanne has an adult son with PWS. She is also a member of our Clinical and Scientific Advisory Board.

Karin Clarke

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.

María Elvira Garcia Ronderos

María Elvira was born in Bogotá, Colombia. She is an Industrial Engineer, and specialised in finance and organisational development and is also a Practitioner in Neurolinguistic Programming. She worked for 33 years in different sectors of the economy. She wrote the book “The Smile Thief”, published in 2017, which is the testimony of a family with a special child. She has been married for over 40 years to Mauricio Sánchez with whom she has four children; the youngest, Carlos Iván, has Prader-Willi syndrome. She has been President of the Asociación Colombiana Síndrome de Prader-Willi since 2019. María was part of the organising committee of international symposiums on PWS in Colombia in 2019 and 2021.

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.

Georgina Loughnan

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.

Yvonne Rochford

Yvonne is based in Ireland. She has an honours degree in Management and Business Studies, from Queen’s University Belfast. Yvonne has worked in Operations, on a National level for almost 10 years. Her most recent role has provided consultancy to both public and private sector businesses. Along with her professional work, Yvonne has been a board member with Prader Willi Syndrome Association of Ireland since 2020. Yvonne’s daughter was born with PWS in 2019.

Honorary President

Board of Trustees

Staff

Advisers

Clinical and Scientific Advisory Board

Professional Providers and Caregivers Board