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.Â
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.
Helen Johnson – Co-Chair
My name is Helen and I live with my family in Traralgon, Latrobe Valley, in regional Victoria. I am a wife to Peter and the proud mother of 2 young men, 33yo Jayden and 30yo Ben who is my SWAN child. Ben was diagnosed with a rare genetic syndrome (600 world-wide) called Rubinstein-Taybi Syndrome (RTS), causing multiple, severe and profound disabilities. He was also diagnosed with severe ‘sensory’ Autism Level 3 at 4yo. Ben also became a paraplegic in 2009, when he was 16yo, due to unexplained post-operative medical complications, causing an incomplete Spinal Cord Injury.Â
Like others, I bring my own lived experience to the CAG as a SWAN mother and I also have 28years professional and voluntary experience in the Carer and Disability Sectors at a local, state and national levels. I am a trained SWAN Peer Support Leader and have worked for SWAN as the Peer Support and Information Officer. With my personal ‘carer/mother’ lived experiences, my professional expertise and volunteer roles, I am passionate to advocate on behalf of SWAN Parent/Carers and their family members, to create awareness and positive systemic change. Â
I feel extremely honoured to be a member of the SWAN CAG and I look forward to making a positive contribution.Â
Maya Pinn
I wear many hats but first and foremost, I am a mum to 2 beautiful children, Lloyd aged 7 and Elsie aged 4. Lloyd is my SWAN, diagnosed with ‘Iqsec2 Associated Disorder’ – a syndrome without a name in 2019. I study a Bachelor of Science (Honours) Full Time, Work Part Time at SWAN, and own RareWear, an adaptive clothing business for children. 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 SteeleÂ
Bio coming soon.
Joel Taggart – Co-Chair
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.
Natasha McVicar
My name is Natasha and I am the mother to a beautiful 1 year old girl named Moremi. Moremi is my little SWAN. After her birth, she was diagnosed with Polymicrogyia, and it was soon discovered that this was a result of a variant on her TUBA1A gene. Being a mother to a SWAN child is a different kind of lonliness -until you find your people. Before I found SWAN I was deep in the grief and isolation, all while navigating becoming a new mum. But through finding SWAN, I was given a new feeling of hope for my family’s future. It was like I had a torch to help me walk through the darkness and unknown. It felt like a safe place to share my world. As a speech pathologist and Director of my own speech pathology business, I have been exposed to the disability world for a long time. Being on the other side of the table as sa parent of a disabled child is a new experience, but one I hold with strength and pride. I hope that I can be a valuable member of the SWAN CAG and I am so honoured to give back to the community that has ben such a fantastic support service for so many families like mine.
