AC 2014: Speaker Biographies

pwsai_ac_2014
[Click here to go to the main Annual Conference page]

Hubert Soyer

Ph.D., Psychology and Pedagogics, Catholic University of Eichstätt-Ingolstadt, 2003.
Dissertation: Studies on social and therapeutic pedagogy of Prader-Willi Syndrome.
Diploma: Psychology, Catholic University of Eichstätt-Ingolstadt, 1999.
Teaching profession for primary and secondary school and special education school, 1977.
Associate lecturer at the Chair for Social Education at the Catholic University of Eichstätt-Ingolstadt since 1999.
General Manager of Regens Wagner Absberg since 1994.
Regens Wagner Absberg is an institution for adult handicapped people offering facilities for living and working. For 18 years the institution has offered special treatment for people with Prader-Willi Syndrome. Since this time there has been cooperation with the Zentrum for Neuropsychologie – Trier and the Catholic University of Eichstätt-Ingolstadt for research on Prader-Willi Syndrome.
IPWSO Board: Co-opted Board Member, June 2011.
IPWSO Professional Providers’ and Caregivers’ Advisory Board: Board Member.
Organiser of the International PPCB Conferences in 2012 in Wildbad Kreuth, and in 2009 and 2008 in Herne, Germany, together with Dr. Norbert Hödebeck-Stuntebeck and the board members of PPCB.

Susanne Blichfeldt

MD, Herlev University Hospital. Denmark Paediatric Senior Consultant specializing in neuropaediatrics. Clinical work comprises diagnostic investigations and treatments of children with various syndromes including Prader-Willi Syndrome. PWS research about growth hormone treatment in children, investigations on sex steroids in adults and about hypotonia in infants. Questionnaires about medical symptoms in adults with PWS in Denmark and in Scandinavia. Co-founder of the Danish PWS association in 1986, now medical advisor and leader of the advisory board of this association. Medical advisor for IPWSO since 2001, and former board member. Since 1986 many presentations and educational sessions on PWS in Denmark and abroad for both parents and professionals. Co-organiser and speaker at previous IPWSO congresses since 1991. From 2010 in the PPCB board (for caregivers) of IPWSO.

Georgina Loughnan

Georgina Loughnan is a physiotherapist who has worked at Metabolism & Obesity Services, Royal Prince Alfred Hospital, Sydney, since 1983. Her main interest is weight management for people with intellectual disabilities and mental illness. In 1991 she established the first adult Prader-Willi Syndrome Clinic in Australia. This is a multidisciplinary team that sees adolescents and adults with PWS for weight, health and lifestyle management. Working with parents and caregivers, in PWS management, is a substantial part of her work.
Georgina has presented at national and international conferences on exercise and weight management for people with PWS and syndrome obesity. A co-author of 3 books and several research papers, she worked on the compilation of Best Practice Guidelines for Standard of Care in PWS. She is presently a member of the International PWS Organisation Board of Directors and is currently co-ordinating IPWSO’s Famcare committee.

June-Anne Gold M.D, FACMG, MRCPCH, DCH, RGN, RMN

I am a clinical geneticist initially trained in the U.K at St Bartholomew’s and the Royal London. My specialist training is in paediatrics and genetics. I have an interest in rare diseases and their natural history. My passion has been for individuals with Prader-Willi Syndrome and the challenges they and their families face. I completed my second genetics training in USA at University of California Irvine (UCI). I won the WSPR David W. Smith Trainee Research award for PWS research 2010. I am currently working as an Associate Professor in Paediatrics, Division of Genetics at Loma Linda University Medical Center CA and UCI. I am currently setting up a team-centred clinic for adults with PWS. I am on the board of directors for PWCF and IPWSO and serve on the governing council for the International graduate section of the American Medical Association (AMA).

Judith Meehan

Dr Judith Meehan is assistant professor of Paediatrics at the National Children’s Hospital, Tallaght and Trinity College Dublin. She completed her training in Paediatrics in Melbourne, Australia and Ireland. Her area of interest is Paediatric Endocrinology and she completed her MD Thesis on Prader-Willi Syndrome.
Today she will the discuss the multi disciplinary clinic, held for children and adolescents with PWS, at Tallaght Hospital, Dublin.

Tony 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 Disability establishing the Cambridge Intellectual and Developmental Disabilities Research Group (www.CIDDRG.org.uk). This multidisciplinary group undertakes a broad range of research relevant to people with intellectual disabilities. His specific interests include the eating, behavioural and mental health problems associated with having Prader-Willi Syndrome; the relationship between Down’s Syndrome and Alzheimer’s disease; and also clinical/legal issues relevant to the needs of people with intellectual disabilities. In 2010 he was elected a Fellow of the Academy of Medical Sciences.

Suzanne Cassidy

Suzanne Cassidy is a Clinical Professor of Paediatrics at the University of California, San Francisco, USA. She is a Clinical Geneticist and Paediatrician whose career includes doing patient care and teaching of medical students, residents and advanced trainees in medical genetics, and she has conducted clinical research mainly focused on Prader-Willi Syndrome. She has conducted multi-disciplinary speciality clinics for PWS since 1981 and has published widely on her clinical observations and research. She has been the Chair of the Scientific Advisory Board of Prader-Willi Syndrome Association (USA) in the past, and remains on that board. She was the first professional delegate to IPWSO from the USA and became its president in 2010. She has helped to organise several IPWSO and PWSA (USA) Scientific Conferences and is a frequent speaker about PWS at local, regional, national, and international educational and medical conferences related to PWS.

Janalee Heinemann, M.S.W.

Director of Research & Medical Affairs, Prader-Willi Syndrome Association (USA)

Education: M.S.W., Washington University, St Louis, MO
Parent of an adult son with PWS

Prader-Willi syndrome background: Volunteer for PWSA (USA) for 16 years prior to becoming Executive Director from 1997 – 2007. Co-founded the MO State Chapter of PWS; Wrote chapters for all three editions of Management of PWS; Wrote numerous articles, chapters, and two booklets on PWS; Presented at many national PWS conferences and conferences in Italy, New Zealand, Israel, Taiwan, China, Japan, Mexico, Chile, Brazil, France, Germany, Romania, the UK and Armenia. Current Vice President of IPWSO Board (International Prader-Willi Syndrome Organization)

Non PWS Professional Experience: Oncology Paediatric Medical Social Worker at St Louis Children’s Hospital – 10 yr.; Hospice Social Worker-3 yr.; Child Abuse & Neglect Social Worker – 6 yr. Developed and facilitated several support group programs.

Advertisements