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National Organisation for FASD Australia

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Congratulations Sue Miers, winner of the 2018 HESTA Unsung Hero award!

Twenty years ago, Sue founded NOFASD Australia to support the thousands of families struggling to understand and manage Fetal Alcohol Spectrum Disorder (FASD), a hidden disability which was virtually unknown in Australia at the time. Following her own difficulties with finding understanding, diagnosis and support with raising her adopted daughter, Sue wished to reach out to make things easier for other families raising a child with FASD. Thanks to Sue’s tireless commitment, significant steps have been made to increase awareness of FASD in Australia and to provide information and support to individuals and families.

Sue’s practice-based wisdom and understanding of FASD, and her practical advice, has helped many parents and carers. She continues to mentor parents, carers and employees working with individuals living with FASD. Sue’s contributions include running a support group, networking to gather support and resources to share with Australian families, reading new research studies and remaining a specialist on the topic of FASD, ensuring NOFASD’s website contains up to date information, and inspiring people to share her important messages supporting alcohol-free pregnancy.

The Australian Medical Association reported that “few accurate data on the prevalence of FASD in Australia is available but it is estimated that FASD affects roughly between 2% and 5% of the population in the United States”. Given these alarming figures, a primary focus of NOFASD during the last 19 years has been prevention. Sue’s activity on social media has ensured that hundreds of thousands of Australians have viewed prevention messages online.

Sue was instrumental in establishing guidelines for NOFASD’s helpline for parents, carers, individuals with FASD, and health professionals. Assistance includes listening and understanding the difficulties which families face, providing strategies for managing difficult situations, providing callers with a referral list of FASD services in their local area, advocating for families who cannot afford to pay for diagnosis and support, and connecting people with others through support groups. Helpline feedback includes:
• I was put in touch with local providers. A whole network of support is in place now through NOFASD’s information and connections.
• I always find NOFASD a really good wealth of knowledge. The key thing is I can be so open without being judged.
• It was great to speak to someone that understands.
• The NOFASD website has a lot of useful information. By calling the helpline I was able to find out who to call and I struck bingo.
If you wish to speak to someone at the NOFASD helpline please call 1800 860 613 or contact us here.

Since it’s beginning, NOFASD Australia has flourished into the leading provider of information, services, linkages and referrals for FASD in Australia. In addition to the helpline, services include FASD workshops delivered around the country, resources including fact sheets, brochures and advice cards, webinars, a parent toolkit, and numerous resources and links available on the website.

NOFASD Australia is grateful to Sue for her tireless commitment over the last 20 years and into the future! Sue was recently recognised as a FASD pioneer, and in 2006 she was awarded a Member of the Order of Australia for her services to the community through the establishment of NOFASD, community education and reconciliation. Thank you Sue!

To read more blogs from NOFASD Australia click here.

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2 Responses

  1. Whilst recognition was never an expectation I was incredibly humbled and honoured to be the chosen recipient for this award. I sincerely thank HESTA for their Community Sector Awards programme which provides a fantastic opportunity to shine a light on issues which need to be identified. Hopefully the awareness this award generates will lead to less children being born with FASD and more positive outcomes for all who are affected by FASD.

    I accept this award on behalf of families who are supporting children and adults who have FASD and the prize money will be used to provide direct support to them. They are all unsung heroes!

    During the last twenty years in my endeavours to raise awareness about FASD I have never worked in isolation and I sincerely thank my husband, family and close friends who were always there to provide emotional support during the tough times, the small handful of professionals who listened and did initiate action, the volunteers whose support was critical in keeping NOFASD going during the many years that our organisation received no government funding and last but not least the wonderful Board and Staff of NOFASD whose passion and commitment is as great as mine!

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