Our mission is to connect our community so that we inspire and learn from each other, provide a gateway to information and resources, and grow a network of local expertise.
External link for CHARGE Syndrome Australasia
Melbourne, VIC 3000, AU
Community engagement 101.
Top-down approaches to community engagement can be problematic for a number of reasons: ➡ They miss the opportunity for genuine insight or reform ➡ Selective participation excludes certain stakeholders ➡ Direction is often aligned with pre-determined outcomes, rendering efforts ineffective and outcomes harmful ➡ Inequalities are perpetuated
CHARGE Syndrome Australasia reposted this
Madelene Rich opened one morning with a quick poll about access to early intervention. A healthy number of parents confirming having access to support that included language modelling, play and sharing experiences. But what was more startling; the age of those ‘children’ was at least 25 years old and many older … What support and access to early intervention are today’s parents of children with CHARGE syndrome getting?
CHARGE Syndrome Australasia reposted this
Clinical Geneticist, Chief Medical Officer Gene S, Clinical Entrepreneur, Precision Medicine Advocate
Congratulations CHARGE Syndrome Australasia for an amazing symposium! Experts from around the world shared with us their knowledge and experience and ongoing research to improve our understanding and care of patients with CHARGE syndrome and their families. Thank you to Trude Jorgensen and Sarah Dalton for so beautifully sharing their lived experience. Madelene Rich Kim Donna Blake
That’s a wrap! 2024 CHARGE Syndrome symposium at Sydney Children's Hospitals Network Randwick. A wonderful day of information and collaboration from an engaging audience and a stellar line up of speakers including our CHARGE Syndrome Ambassador, the brilliant Sarah Dalton. Thanks to Randwick Health & Innovation Precinct for hosting our event and sponsors Cochlear and Deafblind Information Australia Samantha McFedries Suzanna Lindsey-Temple Meredith Prain (she/her) PhD Melanie Robartson Steve Rose Trude Jorgensen
CHARGE Syndrome Australasia reposted this
I’ve been around in the Deafblind space for a while, it was really wonderful to catch up with colleagues, old and new. I’ve had the pleasure to know some since my early career and there are so many who have influenced and inspired my practices and approach to connecting with people. I’ve not mentioned everyone in these posts, but what a blast of a weekend! ‘Welcome to the tribe’ Thank you for the learning and the experience CHARGE Syndrome Australasia and to Madelene Rich for being an awesome champion! David Brown, Timothy Hartshorne, Robert Last, @Kim Blake, @Kasee Stratton-Ghadke, Meredith Prain (she/her) PhD, Madelene Rich, @Carmen Roche’, Natalia Kelly, Trude Jorgensen, Holly Karten, @Liz Levesque, Kelly Weir @Claudia Junghanns, @Heiko Junghanns, Melanie Robartson @Sarah Dalton, @Laura Harper plus many more.
CHARGE Syndrome Australasia reposted this
My family owes so much to this man, Robert Last AM. https://lnkd.in/gFWe9xyM As a proponent of Jan van Dijk's methods of educating children with deafblindness, Rob showed us how to use a total communication approach with our son to support his early communication and literacy skills. For anyone working in the deafblind space, or early intervention, this look back on Rob's remarkable 50 year career highlights the stark difference between service provision then, and now. If we get it right for deafblindness, we get it right for everyone. Meredith Prain (she/her) PhDSteve Rose Natalia Kelly sue silveira Emily Shepard Melanie Robartson Melissa Evans Carmen Roche
We celebrate Rob Last AM’s 50 year legacy to the Australasian CHARGE syndrome community. https://lnkd.in/g8HarCcB Rob Last has been an important international figure in the field of education and advocacy for those with multi-sensory disabilities, deafness, deafblindness and CHARGE syndrome, along with their families. Driven by a passion for communication, Rob utilised his unmatched charisma, patience and warmth to help hundreds of young children find their voice. ‘It was all about getting them to find a form of communication that is meaningful to them, to share their thoughts, feelings, anxieties, their everything…” Thank you Rob for the enormous contribution you have made to helping people with CHARGE syndrome communicate. Read Rob’s story (link above) NextSense Deaf Children Australia Deaf Connect Deafness Forum Australia Expression Australia SensesWA Deafblind Information Australia The World Federation of the Deafblind (WFDB) Able Australia Vision Australia
Thanks Meredith Prain (she/her) PhD. We had pretty awesome delegates as well. 👏
National Head of Research and Centre of Excellence - Deafblind at Able Australia
Still buzzing from the extraordinary CHARGE Syndrome Australasia symposium and conference in Sydney last week. Congratulations CHARGE Syndrome Australasia, and especially Madelene Rich for pulling together such excellent and diverse speakers including Kim Blake, Tim Hartshorne, David Brown, Niall Jefferson, Rob Last, Steve Rose Theresa Kirwan, Carmen Roche, Sarah Dalton and Nas Campanella. I learnt SO much!!
"That was just the most excellent day!! It was honestly the shot in the arm that I needed. I loved meeting Sarah - she made me laugh and cry and gave so much perspective to our work." A very satisfied delegate at our 2024 CHARGE Syndrome symposium held on site at Sydney Childrens Hospital Randwick on 22 August. Thank you to everyone who came, listened, learned and dedicated a full day to CHARGE syndrome. Sydney Children's Hospitals Network Sydney Children's Hospitals Foundation (SCHF) Randwick Health & Innovation Precinct Genetic Alliance Australia NextSense NSW Health
CHARGE Syndrome Australasia reposted this
Which leads to @Kaysee Stratton-Gadke’s work with young adults and the impact of pain. @Sarah Dalton summing up that ‘it’s not a high threshold for pain, it’s a high tolerance to pain’. (And let’s not forget the really helpful CHARGE non-vocal Pain Assessment (https://lnkd.in/gxqcD738) as a means to characterise good and bad days, to then establish indicators of pain in a non speaking population).
The CHARGE syndrome checklist is a critical tool in achieving better health outcomes for people with CHARGE syndrome. Sydney Children's Hospitals Network Sydney Children's Hospitals Foundation (SCHF) Randwick Health & Innovation Precinct
@Kim Blake reminded us, just how central the impact of cranial nerve dysfunction is in the context of CHARGE syndrome. Her CHARGE Syndrome checklist (https://lnkd.in/g7qRFjV7) provides structure for health screening and monitoring. I was also struck by her work on slow gut motility, constipation and pain. Should we be considering the gastrointestinal issues first for children with CHARGE syndrome when faced with eating and feeding issues?