Our speaker bank is comprised of public speakers with personal experience with genetics as an affected individual, carer, or support group lead. Our speakers are versed in a range of topics from navigating the health system to familial impact, and are eager to share with the community the story of their lives, their experiences and their challenges. These speakers present a positive image to the genetics community by providing information and access. Please see below for our list of speakers.
Heather is the Executive Officer and Founder of Syndromes Without a Name (SWAN) – Australia. SWAN provides information and support to families caring for a child with an undiagnosed or rare genetic condition. Heather is the mother two children, Dominic 16 years old and Becky 12 years old. Becky was diagnosed with a rare genetic condition, FOXP1 syndrome at the age of 9 after being misdiagnosed twice with life threatening conditions. Heather is a passionate advocate for families who have children with undiagnosed and rare genetic conditions.
Heather is a member of the Melbourne Genomics Health Alliance Community Advisory Group and the Australian Genomics “Genomics in the Community” Working Group. She is a moderator for both the FOXP1 and Undiagnosed rareconnect.org communities.
Heather is co-founder and Director of Self Management Support, which empowers people to self-manage their own or their child’s NDIS package.
Heather received a Highly Commended in the Service category at the 2017 Premier’s Volunteer Champions Awards. The Melbourne Genomics Community Advisory Group (CAG), which she is an active member won the ‘Outstanding Achievement by a Volunteer – Better Care Victoria Innovation Award’ in the 2017 at the Minister for Health Volunteer Awards. Heather is one of the co-authors on the report “An Ounce of Prevention”, which captured the value of early community engagement and co-design of projects. Heather received a scholarship to the Women’s Board Leadership Mentoring Program for the period 2017/2018.
CEO, Julie Cini founded the Spinal Muscular Atrophy Association of Australia, Inc., after losing both her children to Spinal Muscular Atrophy in 2005 and 2007. Julie Cini strongly believes in creating a future that encourages empowerment, resilience and compassion and by she shares her experience in the hope of encouraging people to make a difference. Julie’s biggest achievement was in 2018 when she successfully campaigned with the SMA community to have an expensive treatment listed on the Pharmaceutical Benefits Scheme (PBS) as well as a pre-genetic screening program. Julie has had extensive media exposure, including The Woman’s Day, Herald Sun, Fox FM, 3AW, Empower Magazine and Melbourne Child. She is an inspiration to all those who hear her speak.
Julie can present on the following topics:
- Mental health – coping strategies
- Drawing inspiration
- Learning how to leave a legacy
- Paying it forward
- Spinal Muscular Atrophy
Georgia is the Secretary for the Australia Alopecia Areata Foundation. She is also a member of the Consumer’s Health Forum of Australia’s Youth Health Forum, and Steering Committee Member of the National Youth Mental Health Engagement Initiative coordinated by headspace. She has been living with Alopecia Areata from a very young age, and is a passionate advocate around appearance diversity, rural/regional services and support, and mental health.
Georgia can present on the following topics:
- Alopecia Areata
- Autoimmune disease
- Dermatological conditions
- Living with a visible medical condition
- Youth issues
- Rural and regional challenges
- LGBTQ+ inclusiveness,
- Mental health
As well being an abuse victim survivor campaigner and a patient, mentor, counsellor and advocate, George (irrespective of his own adversity) has the courage, fortitude and empathy to put himself out there and talk about personal things, experiences and situations that some might find embarrassing.
Driven with passion and by purpose George is a confident, energetic, enthusiastic and passionate award winning presenter who speaks plainly and tells it as it is.
He is recognised by many prominent genetic support organisations in Australia as the authority on his medical conditions.
Unashamedly he boasts, “I once thought of myself as an ‘oddity’, but I am really a ‘rarity’ – and proud of it!”
George has given many lectures, written a number of books, articles and missives published in Australia and around-the-world. As a professional genealogist he was engaged by Warner Bros. International Television Production Australia to consult on the WDYTYA? Australian Television Series episode of Dr Karl Kruszelnicki.
He is the founder, creator, administrator, public face and voice of a number online support groups which provide advice, information, materials and resources to patients, their parents, carers, advocates, medicos, allied healthcare workers and specialists around-the-world:
Pallister-Hall Syndrome (PHS) Support Hub: https://www.facebook.com/Pallister.Hall.Syndrome/
Gelastic Seizure Support Hub: https://www.facebook.com/Gelastic.Seizures/
Albeit living in Queensland, George is Blue Card accredited and available to present on the following topics:
- Pallister-Hall Syndrome (PHS)
- Gelastic Seizures.
- Hypothalamic Hamartomas.
- Living with a genetic disorder.
- Life Stages – Lived Experiences!
- We’re ALL Different!
- Genetic Disorders are Indiscriminate!
- Genetic Disorders are Like Turning Wheels; You Never What the Next Bump Will be?
- An Ignorance of Hidden Disabilities!
- Assumptions, Misconceptions …. the Realities of having a Genetic Disorder!
- Becoming Self-Aware of One’s Condition!
- A Co-ordinating Specialist is a Must!
- Genetic Disorders are Progressive with Age!
- Being Different Doesn’t Mean I am Useless!