Community Advisory Group

Meet the SWAN Community Advisory Group

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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.

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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
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 Bio Photo

Ros Melling – CAG Chair

I am a mother to 3 beautiful children, each with their own complexities. My youngest, ARchie, who is 8, is my SWAN child with a rare genetic diagnosis EXHS1 deficiency. My 13 year old, Phoebe is my cancer warrior/survivor and Oil 11years also has autism. I founded Archie’s Embrace after my youngest became unwell, and am co-director. Archie’s Embrace funds the development/research intro treatment/cures of rare genetic diseases in children. I work part time as a nurse at The Austin – Stroke/Neurology for 25 years. Currently sitting as a volunteer on Banyule Council – Disability & Inclusion Advisory.

Maya
Maya Pinn

I wear many hats but first and foremost, I am a mum to 2 beautiful children, Lloyd aged 6 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
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.

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