Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
Community Advisory Group
Meet the SWAN Community Advisory Group
Sara Crawford
My name is Sara and I am the proud mother of 3 beautiful children, my youngest child, Piper, 8, is my very own SWAN, diagnosed with a rare epileptic encephalopathy caused by a variant on her PCDH19 gene. I hope that I can bring value to the SWAN community through my position as a member of the SWAN CAG. Outside of SWAN I am the founding director of The Pip.ilepsy Foundation. Recently, I was appointed into the role as a Caregiver Representative for Carers Queensland that will prove complimentary to my position with SWAN. I thank SWAN for adding me to their team.
Jenny Downing
I have two SWAN children aged 19 and 16 years old and an older child who is 21 years old. I have a fantastic support worker who has a great relationship with my SWAN kids. There are other members of my family who also need extra support, although they are not ‘special needs’ umbrella or are supported by NDIS. I juggle caring with; part-time work (I teach plant sciences at the University of Melbourne), part time study (Masters of Teaching at La Trobe University), running a house and trying to take care of myself. My ‘dream list’ includes; to do more walking, more painting, more socialising and less of everything.
Julie Edwards
I am a Mum to two amazing boys aged 9 and 10. My youngest son Henry was diagnosed with glass syndrome (aka SATB2 syndrome) when he was 2 years old. Life as a Mum to a child with a rare syndrome is a roller coaster, full of so much joy but also heartache. I am a lawyer and am passionate about advocating for people with disabilities and their families, particularly those with rare or undiagnosed conditions.
Amanda Lennestaal
Bio coming soon.
Ros Melling – CAG Chair
Bio coming soon.
Maya Pinn
I wear many hats but first and foremost, I am a mum to 2 beautiful children, Lloyd aged 5 and Elsie aged 3. Lloyd is my SWAN, diagnosed with ‘Iqsec2 Associated Disorder’ – a syndrome without a name in 2019. I study a Bachelor of Health Sciences Full Time, Work Part Time, am a Small business owner and volunteer for two amazing organisations: SWAN as a Peer Support Facilitator & Association for Children as a Community Engagement Volunteer. Having a community such as SWAN is empowering and heart-warming for our families that are impacted by Rare Conditions; A community full of people who just ‘get it’- a surreal experience that we all deserve.
Sammy Steele
Bio coming soon.
Joel Taggart
My name is Joel, and my wife and I are the proud parents of Shiloh, our lively 2-year-old daughter! After a traumatic pregnancy and 2 years of searching, we recently found out that Shiloh has a rare TCF20 gene mutation. There are only 3 other documented cases in Australia. I look forward to working with the SWAN CAG to advocate for those living with or caring for someone with a rare disease or genetic condition. I am also a Consumer Advocate with the Women’s and Children’s Health Network in South Australia. Given the minimal amount of mental health support for parents (especially fathers/non-birthing parents) during the perinatal period, I have decided to study a Graduate Diploma of Psychology at the University of Adelaide.
Contact Us / Media Enquiries
- PO Box 390 Fairfield VIC 3078
- 0404 280 441
- info@swanaus.org.au