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.

Why do we exist?

CHARGE Syndrome Australasia 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.

The Association is committed to improving this knowledge gap by raising awareness of CHARGE syndrome through its activities. We host biennial conferences, organise local networks and events (CHARGE Champions), provide outreach services to families and professionals (CHARGE Assist), and contribute to research.

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 us so that we can continue to inform, connect and inspire our community and raise awareness of CHARGE syndrome.

Annual Reports

Financial report for the year ending 30 June 2020

Annual Report July 2020 - Dec 2021

Our Board

Madelene Rich - President

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.

Robert Last AM - Vice President

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.

Kath Green - Secretary

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).

Mukesh Baluja - Treasurer (AU)

Mukesh Baluja comes from a corporate sector and is currently working as Commercial Manager. He has a proven track record of partnering with Board and Senior Management to deliver financial and business objectives and gains great satisfaction from establishing structured finance processes and systems that deliver clarity of data and enable non-finance leaders to understand and utilise financial information. He has been involved in voluntary services with other not for profit organisations for over 25 years along side his usual day jobs. Mukesh wishes to contribute to the welfare of community and will assist in strengthening CHARGE Syndrome Association of Australasia’s financial processes and systems.

Annette Stocker - Treasurer (NZ)

Annette rejoined the board in 2019 as she found she had more time to dedicate to supporting the aims of the Board and our New Zealand families. Annette comes from a corporate background and brings her professional expertise and acumen to this role and is strongly committed to connecting families and raising awareness of CHARGE syndrome throughout New Zealand. Annette Stocker resides on the South Island of New Zealand with her husband Tony and two children. Her daughter Aimee has CHARGE syndrome.

Dr Liz Levesque - Education

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.

Louisa Cameron - Communications

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 designs our social and digital communication, and manages our website.

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.

New Zealand: Kelsey Dalton

Bio still to come

CHARGE Assist

Dr Elizabeth Levesque and Rob Last AM

To contact anyone listed above, simply email us and we will connect you.

Governor General Patronage

The Association is proud to have His Excellency General the Honourable David Hurley AC DSC (Retd) and Her Excellency Mrs Linda Hurley as patrons. The Governor-General and Mrs Hurley can attend functions to recognise and celebrate staff, volunteers and donors; and visit organisations to see their operations and meet those that they serve.

These valuable engagement opportunities will further raise awareness of CHARGE syndrome and we will benefit from increased publicity through the Governor-General's social media accounts (Facebook, Instagram, Twitter).