27/06/2026
This weekend marks the end of Deafblind awareness week/month 2026. With yesterday being the coinciding with the birthday of Helen Keller.
I’ve noticed my feed has been flooded with awareness raising posts in the last few weeks, with what feels like an increased shift in the broadening community, coming together to raise awareness.
This month has been filled with community achievements, and I’m lucky to have played a role in helping make some of them happen.
- Last week, colleagues from the Victorian Deafblind Community came together for the third year running, for what is becoming an annual event, and Yarn-bombing the steps of State Parliament Victoria. Sadly, I was unable to make it this year. I was attending another conference but, I was definitely there in spirit! Able Australia Charge Syndrome Australia Guide Dogs Victoria Deafblind Victoria NextSense UsherKids Australia
- Also last week, I attended a magical conference celebrating 20 years of CHARGE Syndrom e.V’s (Germany) support and conferences. I was fortunate to be invited to speak about Communication and CHARGE Syndrome, at this special event. Gracefully and professionally coordinated by Claudia Junghans’ team and family.
There were many highlights, with this being the last conference for some, a first for others, it was a unique panel of speakers, I was grateful to have contributed. CHARGE Syndrom e.V. Charge Syndrom
- In my role at Vision Australia, this week, saw the launch of our new program supporting children with deafblindness. https://visionaustralia.org/services/find-services/children/deafblind-program-children-young-people It’s awesome to see this work enabling service providers and the impact for families and children come to life. Vision Australia
- The Deafblind Information Australia team came together in Perth on Friday. Another valuable opportunity as a team and a launch of a Briefing Paper: National Advocacy Priorities for Australians with Deafblindness, calling for government action on Deafblindness. https://www.deafblindinformation.org.au/wp-content/uploads/2026/06/Briefing_Paper_Deafblind_Advocacy_Priorities_June-2026.docx Deafblind Information Able Australia Deafblind Australia SensesWA
- Deafblind International steadily coordinating whilst celebrating 50 years of support for the community.
Deafblind International (DbI)
- Finally, this month the publication of a new article CHARGE Syndrome: A Narrative Review and Update on Diagnosis, Assessment and Management, which came from collaboration after the CHARGE Syndrome Australia Symposium 2024. https://doi.org/10.1111/jpc.70443 Eleni von Gelder Suzanna Temple Niall Jefferson David Brown Kasee Stratton-Gadke Madelene Rich Steve Rose Kim Blake
Now I write it all down, despite my jet lag, and lack of sleep, there’s clear joy in being involved and supporting these projects and services. I’m sure there’s more I’ve forgotten and more to come. I’m wondering what the next 12 months will bring? I look forward to sharing some highlights in Deafblind Awareness Week 2027!
Image descriptions:
1. A group of people stood on the steps of Parliament House Victoria. Everyone wearing brightly coloured beanies and scarves. There is a large knitted flower and organisation banners behind the group.
2. The group photo from the German CHARGE Syndrom e.V conference. A couple of hundred people stood in a crowd at the venue.
3. A group of speakers stood in front of the CHARGE syndrome e.V. Background
4. Steve, a man with dark hair and moustache, wearing a dark shirt. Speaking at the CHARGE Syndrom e.V conference.
5. The DBIA team each holding a copy of the new briefing paper.
