DAY 1 : FOCUS ON SCIENCE
Genetics and Development
Prof. Duangrurdee Wattanasirichaigoon, Medical Genetics, Mahidol University, Thailand
An overview of the genetics of Prader-Willi syndrome and how development is affected. Slides >
Endocrinology Care and Growth Hormone
Prof. Dr. Muhammad Yazid Jalaludin, University Malaya Medical Centre, Malaysia
Hormone deficiencies & recommendations for monitoring and treatments, including sex hormones and GHT. Slides >
Sleep and Breathing in Children with Prader-Willi Syndrome
Dr. Arun Kumar Pugalenthi, KK Women’s and Children Hospital, Singapore
Respiratory and sleep issues in PWS and what to look out for.
Slides >
Gastroenterology Issues
Assoc. Prof. Ann Scheimann, John Hopkins School of Medicine, USA
A review of the range of GI issues in PWS, including prevalence, evaluation, interventions and treatments.
Slides >
Cognition and Mental Health
Prof. Tony Holland, University of Cambridge, UK, and President, IPWSO
With his extensive expertise in both psychiatry and PWS, Tony Holland shares an understanding of the cognitive and behavioural profile of PWS. Slides >
Healthy Ageing
Dr Susanne Blichfeldt, Herlev University Hospital, Denmark, and Vice Chair Clinical & Scientific Advisory Board, IPWSO
Care recommendations for living a healthy, adult life with PWS. Slides >
Current Research
Kathleen Jones and Dr. Diana Webster, Prader-Willi Research Foundation Australia
A roundup of the latest research being undertaken in Australia and worldwide. Slides >
DAY 2 : FOCUS ON CARE AND SUPPORT
Dietary Management for People with PWS
Assoc. Prof. Dr. Roslee Rajikan, Dietitian, University Kebangsaan Malaysia
Advice on clinical nutrition and diet optimisation for PWS, including management tips.
Slides >
Physical Therapy
Asst. Prof. Visal Kantaratannakul, Rehabilitation Medicine, Samitivej Hospital, Thailand
The importance of exercise in PWS, with many useful and practical examples to use at home. Slides >
Speech Therapy for Improved Communications
Hayley Arnott, Speech and Language Therapist, New Zealand
An overview of speech and language issues in PWS and helpful tips for improving communication. Slides >
Personal Development Record
Dr. Satoko Nakagomi, Shinshu University, and Assoc. Prof. Noriko Sasaki, Nagasaki University, Japan
Details of a useful PWS Health Handbook, developed collaboratively with families to aid support and connection. Slides >
Enabling a Good Life
Dr. John Ford, Psychologist, New Zealand
In this presentation, John describes some of the findings from his thesis: “Supporting adults who have Prader-Willi syndrome: caregivers’ perspectives on the ethical and practical dilemmas.” Slides >
Behavioural Management and Residential Support
Dr. Norbert Hodebeck-Stuntebeck, Psychologist & Psychotherapist, Germany
Strategies for behavioural management and finding solutions for more problematic situations. Slides >
Residential Services in New Zealand
John Taylor, Enabling Good Lives, and Cindy Adams-Vining, PWSA(NZ)
An introduction to the new EGL approach launching nationwide, and a description of the current landscape of residential care for adults with PWS in NZ.
Residential Services in Australia
Damien Jones, Interaction Disability Services, Australia
Interaction are an experienced provider of speciality support services for PWS and Damien describes opportunities available for adults with PWS in Australia . Slides >
IPWSO Role and Support
James O’Brien, Vice-President, IPWSO
The role of the International Prader-Willi Syndrome Organisation in uniting the PWS community, advocating for and supporting individuals with PWS, their families, PWS associations, and professionals. Slides >
DAY 3 : HEAR OUR VOICES
New Beginnings – Parents’ Stories: Diagnosis and Early Days
Parents from Australia, Thailand, Indonesia and New Zealand
Featuring the families of Lorenzo, Nangfah, Sulaiman and Tommy.
Start of Our Journey (0 – 6 yrs) – Part 1
Children and their families from New Zealand and Thailand
Featuring the families of Veronica, Josie, Emily and Aum.
Start of Our Journey (0 – 6 yrs) – Part 2
A child and their family from New Zealand.
Featuring the family of Emily.
Start of Our Journey (0 – 6 yrs) – Part 3
Children and their families from Australia and Malaysia
Featuring the families of Mabel and Tan Ming Jyn.
A Day in the Life (6 – 12 yrs) – Part 1
Children and their families from Malaysia and Australia.
Featuring Mikhail (Mike) and Tobias.
A Day in the Life (6 – 12 yrs) – Part 2
Children and their families from New Zealand and Thailand.
Featuring Kaahu, Amy, Miro, Isla, Max and Third.
I’m Growing Up (Adolescence) – Part 1
Voices of adolescents with PWS from Thailand, Malaysia and Australia.
Featuring Life, Peem, Prae, Zuhayra Nurisq and Ricky.
I’m Growing Up (Adolescence) – Part 2
Voices of adolescents with PWS from New Zealand.
Featuring a group of friends meeting up at an organised weekend and via Zoom.
My Story: Life Experience Stories by Adults with PWS – Part 1
Stories shared by adults with PWS from Japan, Thailand and Malaysia.
Featuring Ms Mori, Mr Hikichi, Earth, Nene, and Malaysian twins, Sze Huii and Sze Minn.
My Story: Life Experience Stories by Adults with PWS – Part 2
Stories shared by adults with PWS from New Zealand and Australia.
Featuring James and Emma, Shaun, Bradley, Barbara and Kade.
Living Options – Part 1
A look at supported living / residential care options in China and Germany.
Featuring Dr. Norbert Hodebeck-Stuntebeck with Ingor and Steffi.
Living Options – Part 2
A look at supported living / residential care options in Australia.
Featuring Katherine, Nathan and Bradley who take you on a tour of their PWS specific group homes.
Living Options – Part 3
A look at supported living / residential care options in New Zealand.
Featuring Rachel living in the community supported by EGL; Emma, Sam, Kelly and Cheree living in a PWS specific group home, and Hannah in a mixed living environment supported by an Independency Trust.
Friendships Beyond Borders
Adults with PWS from Malaysia, Australia and New Zealand engaging in group discussion.
Featuring Katherine, Kyle, Ken, Natasha and Jacob, and facilitated by Mr Gan, Head of Clinical Psychology, UKM Malaysia.
