Established in Sept. 2019The Australian CF Hub is run solely by Australian adults living with cystic fibrosis (CF). We strive to create an inclusive and respectful space for all.
We are a dedicated group of volunteers. We all have CF. We are all different. Many of us were diagnosed at birth, others later as adults. Some of us are post transplant. This is a group for anyone with CF. We welcome respectful constructive discussion. So far, we're volunteering out time and doing it all on a $0 budget using free online tools etc. We welcome all input and feedback. If you have any suggestions please don't hesitate to share them with us. |
Our MissionTo connect Australian adults with CF so we can share experiences, share knowledge, and share support.
Our VisionAll people with CF have the resources, support, knowledge and confidence to live well with CF.
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Want to know a bit more about us . . ?
Pia Sappl
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Michael Cahill
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Andrew Prowse
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Kate Hooke
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Andrew is 33, married and living his best life. He was diagnosed at birth with cystic fibrosis and in 2017 was the recipient of a double lung transplant.
Andrew has been actively involved with CF ACT as a volunteer, fundraiser and advocate since 2010. In 2019 he was appointed as an Adult Representative on the CF ACT Management Committee. He was the co-founder of the Santa Speedo Shuffle with his wife Heidi that has raised over $800,000 for local families living with cystic fibrosis. In 2018 he was awarded the ACT Volunteer of the Year - Profound Influence award for his long term work as a volunteer advocate and fundraiser. Andrew has worked in social security payment policy in the Australian Public Service for over 11 years. His extensive social security knowledge can be utilised for the benefit of CF adults across Australia. In addition, he brings extensive consumer experience across the ACT and NSW health systems. Current Volunteer Roles (beyond the CF Hub)
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Kate was diagnosed with CF when she was 6, she is now 51 and married with a teenage son. She works part-time as a social worker and has spent the last 30 years working in a professional or volunteer capacity to address the many social issues faced by people with disabilities and their families. Kate currently works part time as a group work facilitator for the Cerebral Palsy Alliance: teaching teens with Autism to make and keep friends; and teaching adults with Cerebral Palsy mindfulness skills
Her past voluntary roles have included serving for two years on NSW Youth Advisory Council, two years on the NSW Health Consumers management committee, two years as the secretary of the NSW Social Workers in Disability special interest group, seven years as a board member of NSW Cystic Fibrosis Association and two years as the manager of the under 9 and under 10’s North Sydney Bears Green cricket team. She has also spent the past six years as a volunteer teaching Ethics in a local primary school. Kate’s greatest success recently was fighting the NDIS for entry to the scheme to fund her airway clearance. This was a taxing two-year fight that ended up at the Administrative Appeals Tribunal with the NDIS granting her access. Since this time she has supported a number of other people with CF to access the NDIS. |
Walter van Praag
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Amanda Nobbs-Bearcroft
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Please contact us if you would like to get involved :)
If you are curious about what we do, have a project in mind, or have constructive feedback, please get in touch. We wish for the CF Hub to have a diversity of voices. Everyone's voice counts.