About Us

 
 

Vision

People with CHARGE syndrome reach their potential and thrive in inclusive and supportive communities.

Our Mission

Connect our community so that we inspire and learn from each other, provide a gateway to information and resources, and grow a network of local expertise.

 
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Why do we exist?

CHARGE Syndrome Association of Australasia Ltd (CSAA) was established in 1994 and is the only volunteer not-for-profit support group dedicated to improving the lives of individuals with CHARGE syndrome, in Australasia.

CHARGE syndrome is a complex syndrome of multi sensory impairments. Individuals have impaired hearing, vision, smell, taste, touch, proprioception and inner ear balance. Multiple disciplines are involved long term in the lives of these individuals; from medical intervention to communication strategies, sensory integration, behaviour management, therapy and education support. Unfortunately for families, many of our health and educational professionals do not fully understand CHARGE syndrome and the complexities of multi sensory impairment.

CSAA is committed to improving this knowledge gap by raising awareness of CHARGE syndrome through its activities. It hosts biennial conferences, organises local networks and events (CHARGE Champions), provides outreach services to families and professionals (CHARGE Assist), supports and contributes to research and is a hub of information and resources available on our website.

As a not for profit, registered charity, we rely heavily on donations, fundraising, grants and sponsorship to support our aims and activities. Please consider donating to CSAA so that we can continue to inform, connect and inspire our community and raise awareness of CHARGE syndrome.

 
 

Our Board

President - Madelene Rich

Madelene Rich has substantial not for profit knowledge and experience having held several Executive Assistant roles in this sector. She was CSAA Secretary from 2000-2008 and in 2018 she led the Melbourne organizing committee for the 13th Biennial CHARGE conference. She was elected President in 2018. Madelene’s adult son Sean has CHARGE syndrome.

Vice President - Robert Last AM

Rob Last is a retired Teacher of the Deaf and Early Childhood Educator and worked with a number of children in the 1980s when CHARGE syndrome was relatively unknown. He was instrumental in establishing our group in 1988 and coordinated the first CHARGE syndrome conference in Australia. His expertise is in early communication and the importance of meaningful communication systems. In 2018, Rob received an Order of Australia Award for significant service to children who are deaf, deafblind, or have low vision, and their families, particularly those with CHARGE syndrome.

Treasurer - Simon Robinson

Simon Robinson has an economics degree with extensive experience across telecommunications, professional and financial services industries, engaging senior leadership across customer strategy, data analytics, risk and governance. Simon has been Treasurer since 2014. Simon’s daughter Eleanor has CHARGE syndrome.

Secretary - Kath Green

Kath Green is retired from corporate roles within the finance sector and is keen to give back to the community through volunteering opportunities. She has an interest in the not for profit sector and is completing a Diploma in Business. In addition to the Secretary role, Kath provides project management support to special projects (such as the Massive Open Online Course ‘Understanding CHARGE Syndrome in development).

Communications Officer – Louisa Cameron

Louisa Cameron is a human-centred designer, with a marketing degree and masters in human-computer interaction. For the last 3 years, she has been designing digital interfaces in the health industry. Her daughter Lillian has CHARGE syndrome and Louisa is passionate about making digital health services easier for everyone to use. Louisa contributes to the usability of our website and designs our communication and conference materials.

CHARGE Champions

NSW: Ellen Howe

Ellen is an adult with CHARGE syndrome who has been a part of our Association for many years. Her mother, Marea, helped develop the first Australasian manual on CHARGE syndrome in the early 1990s. Ellen loves to help others and connect families, often organising local get togethers for Sydney families. Ellen belongs to Achilles Sydney, a walking group for people with visual impairments, and will be attempting her first City to Surf walk in 2019.

Victoria: Belinda Arnell

Belinda Arnell is an adult with CHARGE Syndrome.  She has spoken at national and international CHARGE syndrome conferences, and was on the committee for the 13th Biennial conference in Melbourne 2018.  She enjoying meeting and interacting with families and professionals in the CHARGE Syndrome community. She works full time and is studying law.

Tasmania: Kylie Moore

Kylie has a science degree as well as a graduate certificate in management. She has several years’ experience working as a Human Resources professional in the NFP disability sector. Kylie has previous board experience with a small, local NFP and local school. She is leading the organising committee for the 2020 CHARGE conference in Hobart, Tasmania. Kylie is mum to a young boy, Lachlan whom has CHARGE syndrome.




CHARGE Assist

Dr Elizabeth Levesque

Liz, General Manager of the Victorian Deaf Education Institute, has taught in the deaf, deafblind and multi-sensory impairment fields for several decades. Liz has a strong interest in communication and language development of children with CHARGE syndrome and is a passionate supporter of self-advocacy for children with CHARGE syndrome and other complex conditions.

Rob Last AM

Rob is a retired Teacher of the Deaf and Early Childhood Educator. His expertise is in early communication and the importance of establishing meaningful communication systems and strategies. His great depth of knowledge on CHARGE syndrome comes from 30 years in the field and regular attendance at local and international CHARGE syndrome conferences.