Community social media support
To connect with other families of people living with Angelman syndrome there are a number of social media pages and groups:
Angelman Syndrome Association Australia – Public Facebook Page
Australian Families with AS – Private Facebook Group
NDIS and AS Families – Private Facebook Group
Angelman Syndrome Association WA – Private Facebook Group
Queensland Angelman Association Family Network – Private Facebook Group
Angelman Syndrome Association of South Australia – Private Facebook Group
Foundation for Angelman Syndrome Therapeutics – Public Facebook Page
Angelman Syndrome Foundation (USA) – Public Facebook Page
Angelman Connections – Closed Facebook Group
Angelman Syndrome Seizure Information – Closed Facebook Group
Angelman Syndrome Foundation (USA) – Private Facebook Group
Angelman Research and Trials – Private Facebook Group
Angelman Syndrome Seizure Information – Private Facebook Group
Gene Therapy for Angelman Syndrome – Private Facebook Group
Angelman Syndrome and Alternative Health Approaches – Private Facebook Group
COVID-19 Resources
The following are useful articles and resources that may assist you in preparing for COVID-19:
References and Resources
The following are useful articles and resources related to a number of the key interest areas for Angelman syndrome.
These may be shared with family and friends, medical and allied health practitioners, and also referenced in NDIS Plan Reviews.
- Clinical aspects of a large group of adults with Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/33108066/
- Angelman Syndrome in adolescents and adulthood – Angelman syndrome in adolescence and adulthood: A retrospective chart review of 53 cases – PubMed (nih.gov)
- Autism in Angelman syndrome: an exploration of comorbidity – PubMed https://pubmed.ncbi.nlm.nih.gov/15165432/
- Adaptive Behaviour Skills in Angelman Syndrome – https://www.findresources.co.uk/the-syndromes/angelman/adaptive-behaviour
- Sensory processing patterns in persons with Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/16915878/
- Refining the Behavioral Phenotype of Angelman Syndrome: Examining Differences in Motivation for Social Contact Between Genetic Subgroups – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7921159/pdf/fnbeh-15-618271.pdf
- The prevalence of aggression in genetic syndromes: a review – PubMed https://pubmed.ncbi.nlm.nih.gov/24594523/
- Anxiety-associated and separation distress-associated behaviours in Angelman syndrome – PubMed (nih.gov)
- Discrimination training reduces high rate social approach behaviors in Angelman syndrome: proof of principle – PubMed (nih.gov)
- Video Modelling – Imitation in Angelman syndrome: the role of social engagement (nature.com); Home | Anthea Naylor (videoselfmodelling.com)
- Positive Behaviour Supports – https://fb.watch/bKo_c8O6Xj/
Angelman syndrome communication overview
- https://angelmansyndromenews.com/comunication-difficulties-in-angelman-syndrome/
- Communication in Angelman syndrome: a scoping review (ern-ithaca.eu)
- Communication Strategies for Children with Angelman Syndrome – Consult QD (clevelandclinic.org)
The role of vision and behaviour – https://www.angelman.org/studies/vision-communication/
Gestures in Angelman syndrome
- Use of Enhanced Natural Gestures to Foster Interactions Between Children With Angelman Syndrome and Their Parents | American Journal of Speech-Language Pathology (asha.org)
- The development of gesture and prelinguistic communication in Angelman syndrome — Aston Research Explorer
Training series – https://www.angelman.org/resources-education/communication-training-series/
Research in AS and communication – https://cureangelman.org/orca
Emergency Care Hotline – a global 24-hour emergency and urgent care hotline will be available for provider-to-provider consultations to appropriately manage issues, particularly seizures, related to Angelman syndrome.
Epilepsy in Angelman syndrome: A scoping review – PubMed https://pubmed.ncbi.nlm.nih.gov/32893075/
- Effect of epilepsy on autism symptoms in Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/29340132/
- Are Angelman and Prader‐Willi syndromes more similar than we thought? Food‐related behavior problems in Angelman, Cornelia de Lange, Fragile X, Prader‐Willi and 1p36 deletion syndromes – Welham – 2015 – American Journal of Medical Genetics Part A – Wiley Online Library https://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.36923
- Prevalence of gastrointestinal symptoms in Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/28816003/
- Angelman syndrome: A review highlighting musculoskeletal and anatomical aberrations – PubMed https://pubmed.ncbi.nlm.nih.gov/26480021/
- Dystonia in Angelman syndrome: a common, unrecognized clinical finding – PubMed https://pubmed.ncbi.nlm.nih.gov/33484323/
- Incontinence in persons with Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/28000035/
- Incontinence in individuals with Angelman syndrome: a comparative study – PubMed https://pubmed.ncbi.nlm.nih.gov/24076983/
- Timed Toileting – The effectiveness of different methods of toilet training for bowel and bladder control – The effectiveness of different methods of toilet training for bowel and bladder control. – AAHD
- Hyperactivity, Irritability and Outbursts in Children with Angelman Cause Stress for Parents, Study Finds – https://angelmansyndromenews.com/news-posts/2019/05/17/hyperactivity-irritability-aggressiveness-common-children-angelman-syndrome/
- Parental and carer responses to Angelman syndrome and Prader-Willi syndrome – https://ro.ecu.edu.au/theses/434
- The Association of Challenging Behaviors in Children with Angelman Syndrome on Caregiver Anxiety, Stress, and Depression – PowerPoint Presentation (purdue.edu)
- Psychological well-being in parents of children with Angelman, Cornelia de Lange and Cri du Chat syndromes – PubMed (nih.gov)
- Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior: A Cross-Sectional and Longitudinal Study – PubMed (nih.gov)
- Sleep in Angelman syndrome: A review of evidence – PubMed https://pubmed.ncbi.nlm.nih.gov/28784434/
- Interventions to improve sleep for individuals with Angelman syndrome: A systematic review – PubMed https://pubmed.ncbi.nlm.nih.gov/31869773/
- Characterization of sleep habits and medication outcomes for sleep disturbance in children and adults with Angelman syndrome – PubMed https://pubmed.ncbi.nlm.nih.gov/32506735/
- Sleep in children and adolescents with Angelman syndrome: association with parent sleep and stress – PubMed https://pubmed.ncbi.nlm.nih.gov/22044653/
- Cerebra – Sleep: A Guide for Parents Sleep – Cerebra
A story about Angelman syndrome
Meet Emily & Michelle
Meet Laura & her two children
Meet Joanne, Frank & Jacob
Videos
For more videos on Angelman syndrome, the Global Angelman Registry, and Research visit – Foundation for Angelman Syndrome Therapeutics YouTube Channel
Speech from Kane Blackman for the Launch of the Rare Disease Strategic Action Plan at Parliament House on 26 February 2020 – Rare Voices Australia – Rare Disease Speech – Kane Blackman