Video Library and
Prader-Willi Syndrome Resource Hub

Explore expert sessions and real experiences from the APPWS conferences, plus a growing collection of topic-based resources on Prader-Willi Syndrome (PWS).

Asian Pacific Prader-Willi Syndrome
Sydney Conference 2024

Includes: Support Provider Sessions, Family & Allied Health, OWLA Member Stories,
Fireside & Panels, Media Booth Interviews

Support Providers sessions

IPWSO overview

Neil Gumley

Life stages: adolescence, adulthood
and ageing

Norbert Hodebeck-Stuntebeck
& Damien Jones

Avoiding arguments and managing meltdowns

Eileen Rostron and Rosemary

View all

Positive behavioural support
and restrictive practices

Kimberly Herivel and Natasha Tmusic

Friendships, relationships and sexuality

Neil Gumley

Overview of current PWS trends and literature

John Ford

Family and Allied Health

Closing of APPWS conference

PWSA Chair James O’Brien

PWS in Vietnam

Do Thuy Lan

PWSA New Zealand

Jo Davies

View all

Nurturing parental/carer wellbeing

Diane Mangley

Funding the journey

Teresa Amore

Centre of expertise

Associate Professor Honey Heussler

Transition from school

Cindy Adams-Vining

Present and future treatments

Professor Tony Holland

Sleep disorders in PWS

Dr Brendon Yee

Healthy eating (adolescents and adults)

Dr Janet Franklin

Sibling support / Zoom group

Grace Kelly

Nutrition for healthy children

Cate Fox

Encouraging communication in all ages part 1

Anica Jansson

Encouraging communication in all ages part 2

Hayley Arnott

Move to thrive, Empowerment through physical activity

Pauline Chuang & Jessica McDowell

Is growth hormone worth it for adults
with PWS part 1

Assoc Prof Laura De Graaff

Lifelong medical support

Assoc Prof Tania Markovic

Mental health and behaviour in PWS

Dr Deepan Singh

Genetics overview

Prof Duangrurdee Wattanasirichaigoon

Our Way of Life Australia (OWLA) Members stories

How I got my therapy dog

Molly

Eating healthy and staying active

Laura

Food and me

Bella

View all

A productive work day

Kade

My journey

Isabelle

PWS and restrictive practices

David

Life after school

Ricky

Trips, Concerts, Musicals and How they support PWS

Kiara

Fireside panel

Fireside chat

Dr Deepan Singh and Dr Tony Holland

Media booth interviews

Parent part 1

Tina Costanzo

Parent part 2

Janelle Carroll

Parent part 3

Terry Fine

View all

PWSA director

Craig Moore

Multicap

Trent Carberry

Support worker

Ross Fotheringham

Behaviour specialist and psychologist

Fernanda Murialdo

The Orange Hive

Neil Gumley

Allinto

Cherie Reestones

NAPA Centre

Pauline Chuang

KU Medical Centre

Olivia Veatch

Able Foods

Laura

Aardvark Therapeutics

Alexa

Interaction Disability

Jessica Bush

Interaction Disability CEO

Brett Thompson

PWSA Victoria

Kurstie Jenkins

PWSA chair & parent

James O’Brien

Speech pathologist

Clare McCluskey

Asian Pacific Prader-Willi Syndrome
Melbourne Conference 2015

Includes: Medical & Scientific, Nutrition & Exercise, Family & Support, Life Stages & Transitions, Panels & Conference Milestones, Personal Perspectives

Medical and Scientific

Sleep complications

Associate Professor G Nixon

Complications of obesity

Dr T OMoore Sullivan

PWS oxytocin anomaly

Prof S Einfeld

View all

Growth hormones for infants

Dr E Scheermeyer

Growth hormones for adults part 1

Assoc Prof C Hoybye

Growth hormones for adults part 2

Assoc Prof P Hofman

Insulin-mediated signaling pathway is defective in primary fibroblasts

Dr E Fortunati

Paravertebral muscles and scoliosis

Dr N Murakami

Genetic subtypes and
neuropsychiatric diagnosis

Dr N Weisensel

Genetic research

Asso Prof E Smith

Overview of PWS phenotypes

J Ford

Energy metabolism

Dr O Nyunt

Sex hormones

Prof T Markovic

The use of psychiatric medications

Prof S Einfeld

Research in metabolism
and appetite regulation

Prof S Einfeld

How the brain works

Dr J Forster

Carralluma fimbriata update

J Griggs

Family and Support

Diet and nutrition part 1

K Chisolm

Diet and nutrition part 2

M Taylor

Bariatric surgery for people with PWS

Prof G Witter

View all

Food security (The TRAIN model)

Dr J Forster

Exercise

Prof N Shields

Family and Support

Steppingstones parenting program

Prof S Einfeld

Social skills

Prof S Stiefel

Overview of multidisciplinary care required

Dr M Rowell

View all

Children's panel

Sensory integration

Dr J Forster

Life Stages and Transitions

From childhood to adulthood

A Sakaris

Living with an adult with PWS part 1

H Anderson

Living with an adult with PWS part 2

Kate de Josselin

View all

Housing and accommodation part 1

D Jones

Housing and accommodation part 2

K McNamara

Housing and accommodation part 3

C Adams Vining

Housing and accommodation part 4

J O’Brien

Housing and accommodation part 5

Q & A

Ageing in PWS

G Loughnan

Inclusion in mainstream

S Higgins

Panels and Conference Milestones

Welcome and conference opening

T Percival & T Maguire

End of conference panel

IPWSO update

Georgina Loughnan

View all

New Australian research foundation

K Jones, Prof K Bennell & Prof D Segal

Personal perspectives

My life with PWS

E Gumbleton

A sibling’s point of view

E Doonan

Prader-Willi Syndrome topics

Includes: General Understanding, Behavioural & Mental Health, Early Diagnosis, Nutrition & Lifestyle

Video Library andPrader-Willi Syndrome Resource Hub

Asian Pacific Prader-Willi SyndromeSydney Conference 2024

Support Providers sessions

IPWSO overviewNeil Gumley

Life stages: adolescence, adulthood and ageingNorbert Hodebeck-Stuntebeck& Damien Jones

Avoiding arguments and managing meltdownsEileen Rostron and Rosemary

Positive behavioural support and restrictive practicesKimberly Herivel and Natasha Tmusic

Friendships, relationships and sexualityNeil Gumley

Overview of current PWS trends and literatureJohn Ford

Family and Allied Health

Closing of APPWS conferencePWSA Chair James O’Brien

PWS in VietnamDo Thuy Lan

PWSA New ZealandJo Davies

Nurturing parental/carer wellbeingDiane Mangley

Funding the journeyTeresa Amore

Centre of expertiseAssociate Professor Honey Heussler

Transition from schoolCindy Adams-Vining

Present and future treatmentsProfessor Tony Holland

Sleep disorders in PWSDr Brendon Yee

Healthy eating (adolescents and adults)Dr Janet Franklin

Sibling support / Zoom groupGrace Kelly

Nutrition for healthy childrenCate Fox

Encouraging communication in all ages part 1Anica Jansson

Encouraging communication in all ages part 2Hayley Arnott

Move to thrive, Empowerment through physical activityPauline Chuang & Jessica McDowell

Is growth hormone worth it for adults with PWS part 1Assoc Prof Laura De Graaff

Is growth hormone worth it for adults with PWS part 1Assoc Prof Laura De Graaff

Lifelong medical supportAssoc Prof Tania Markovic

Mental health and behaviour in PWSDr Deepan Singh

Genetics overviewProf Duangrurdee Wattanasirichaigoon

Our Way of Life Australia (OWLA) Members stories

How I got my therapy dogMolly

Eating healthy and staying activeLaura

Food and meBella

A productive work dayKade

My journeyIsabelle

PWS and restrictive practicesDavid

Life after schoolRicky

Trips, Concerts, Musicals and How they support PWSKiara

Fireside panel

Fireside chatDr Deepan Singh and Dr Tony Holland

Media booth interviews

Parent part 1Tina Costanzo

Parent part 2Janelle Carroll

Parent part 3Terry Fine

PWSA directorCraig Moore

MulticapTrent Carberry

Support workerRoss Fotheringham

Behaviour specialist and psychologistFernanda Murialdo

The Orange HiveNeil Gumley

AllintoCherie Reestones

NAPA CentrePauline Chuang

KU Medical CentreOlivia Veatch

Able FoodsLaura

Aardvark TherapeuticsAlexa

Interaction DisabilityJessica Bush

Interaction Disability CEOBrett Thompson

PWSA VictoriaKurstie Jenkins

PWSA chair & parentJames O’Brien

Speech pathologistClare McCluskey

Asian Pacific Prader-Willi SyndromeMelbourne Conference 2015

Medical and Scientific

Sleep complicationsAssociate Professor G Nixon

Complications of obesityDr T OMoore Sullivan

PWS oxytocin anomalyProf S Einfeld

Growth hormones for infantsDr E Scheermeyer

Growth hormones for adults part 1Assoc Prof C Hoybye

Growth hormones for adults part 2Assoc Prof P Hofman

Insulin-mediated signaling pathway is defective in primary fibroblastsDr E Fortunati

Paravertebral muscles and scoliosisDr N Murakami

Genetic subtypes and neuropsychiatric diagnosisDr N Weisensel

Genetic researchAsso Prof E Smith

Overview of PWS phenotypesJ Ford

Energy metabolismDr O Nyunt

Sex hormonesProf T Markovic

The use of psychiatric medicationsProf S Einfeld

Research in metabolism and appetite regulationProf S Einfeld

How the brain worksDr J Forster

Carralluma fimbriata updateJ Griggs

Family and Support

Video Library and
Prader-Willi Syndrome Resource Hub

Asian Pacific Prader-Willi Syndrome
Sydney Conference 2024

IPWSO overview

Neil Gumley

Life stages: adolescence, adulthood
and ageing

Norbert Hodebeck-Stuntebeck
& Damien Jones

Avoiding arguments and managing meltdowns

Eileen Rostron and Rosemary

Positive behavioural support
and restrictive practices

Kimberly Herivel and Natasha Tmusic

Friendships, relationships and sexuality

Neil Gumley

Overview of current PWS trends and literature

John Ford

Closing of APPWS conference

PWSA Chair James O’Brien

PWS in Vietnam

Do Thuy Lan

PWSA New Zealand

Jo Davies

Nurturing parental/carer wellbeing

Diane Mangley

Funding the journey

Teresa Amore

Centre of expertise

Associate Professor Honey Heussler

Transition from school

Cindy Adams-Vining

Present and future treatments

Professor Tony Holland

Sleep disorders in PWS

Dr Brendon Yee

Healthy eating (adolescents and adults)

Dr Janet Franklin

Sibling support / Zoom group

Grace Kelly

Nutrition for healthy children

Cate Fox

Encouraging communication in all ages part 1

Anica Jansson

Encouraging communication in all ages part 2

Hayley Arnott

Move to thrive, Empowerment through physical activity

Pauline Chuang & Jessica McDowell

Is growth hormone worth it for adults
with PWS part 1

Assoc Prof Laura De Graaff

Is growth hormone worth it for adults
with PWS part 1

Assoc Prof Laura De Graaff

Lifelong medical support

Assoc Prof Tania Markovic

Mental health and behaviour in PWS

Dr Deepan Singh

Genetics overview

Prof Duangrurdee Wattanasirichaigoon

How I got my therapy dog

Molly

Eating healthy and staying active

Laura

Food and me

Bella

A productive work day

Kade

My journey

Isabelle

PWS and restrictive practices

David

Life after school

Ricky

Trips, Concerts, Musicals and How they support PWS

Kiara

Fireside chat

Dr Deepan Singh and Dr Tony Holland

Parent part 1

Tina Costanzo

Parent part 2

Janelle Carroll

Parent part 3

Terry Fine

PWSA director

Craig Moore

Multicap

Trent Carberry

Support worker

Ross Fotheringham

Behaviour specialist and psychologist

Fernanda Murialdo

The Orange Hive

Neil Gumley

Allinto

Cherie Reestones

NAPA Centre

Pauline Chuang

KU Medical Centre

Olivia Veatch

Able Foods

Laura

Aardvark Therapeutics

Alexa

Interaction Disability

Jessica Bush

Interaction Disability CEO

Brett Thompson

PWSA Victoria

Kurstie Jenkins

PWSA chair & parent

James O’Brien

Speech pathologist

Clare McCluskey

Asian Pacific Prader-Willi Syndrome
Melbourne Conference 2015

Sleep complications

Associate Professor G Nixon

Complications of obesity

Dr T OMoore Sullivan

PWS oxytocin anomaly

Prof S Einfeld

Growth hormones for infants

Dr E Scheermeyer

Growth hormones for adults part 1

Assoc Prof C Hoybye

Growth hormones for adults part 2

Assoc Prof P Hofman

Insulin-mediated signaling pathway is defective in primary fibroblasts

Dr E Fortunati

Paravertebral muscles and scoliosis

Dr N Murakami

Genetic subtypes and
neuropsychiatric diagnosis

Dr N Weisensel

Genetic research

Asso Prof E Smith

Overview of PWS phenotypes

J Ford

Energy metabolism

Dr O Nyunt

Sex hormones

Prof T Markovic

The use of psychiatric medications

Prof S Einfeld

Research in metabolism
and appetite regulation

Prof S Einfeld

How the brain works

Dr J Forster

Carralluma fimbriata update

J Griggs

Diet and nutrition part 1

K Chisolm

Diet and nutrition part 2

M Taylor

Bariatric surgery for people with PWS

Prof G Witter

Food security (The TRAIN model)

Dr J Forster

Exercise

Prof N Shields

Steppingstones parenting program

Prof S Einfeld

Social skills

Prof S Stiefel