Huntington’s NSW ACT develops and runs support and educational programs for people affected by Huntington’s disease. We are an incorporated, not-for-profit organisation governed by a Board elected annually by our members. For more information about our Board and governance, please click here.
We are licensed to raise funds for charitable purposes in New South Wales (Authority No: CFN13153) and the Australian Capital Territory (via ACNC). Our Australian Business Number (ABN) is 54 571 730 306, and we are endorsed by the Australian Taxation Office as a Deductible Gift Recipient. Gifts of $2.00 and upwards are tax deductible in Australia. To make a donation, please click here.
The Association gratefully acknowledges continuing support from its many generous donors and supporters, including the NSW Department of Health, the St George Foundation, the Ansvar Community Education and the Westpac Foundation. Please see our Funding page for more information about our funding and finances.
- Provide HD information to community members and care professionals within NSW and ACT
- Ensure high quality education is available to HD community members and care professionals within NSW and ACT
- Provide HD-specific services that improve the quality of life for those impacted by HD
- Respond to the concerns and aspirations of our members through advocacy that aims to improve government policies and services within disability, health and social care and justice systems
- Raise awareness of HD in communities where people with HD live, and more broadly
At Huntington’s NSW ACT we:
- lobby governments to fund specialist HD social workers
- campaign for HD specialist residential and community services in regional NSW and ACT
- campaign for NDIS planners and providers to understand the needs of people with HD
- campaign for appropriate care for people with HD within the justice system
Lewis has been CEO of Huntington’s NSW ACT since February 2019. He leads the delivery of the association’s strategy and operations, working with a small but dedicated team of staff and volunteers.
Lewis has 35 years’ leadership experience in public health including over 20 years in CEO roles in peak consumer and health organisations. He is married with 3 children and 4 grandchildren... Read More
Work days: Tuesday, Wednesday and ThursdayEmail: email@example.com
Mobile: 0407 108 667
Giselle Beaumont, NDIS Senior Support Coordinator
Giselle is our Senior NDIS Support Coordinator who assists all Huntington’s clients who meet the NDIS eligibility. Her knowledge of both HD and the NDIS, and her passion for social justice, allows her to fully understand the needs of our community.
Work days: Monday to FridayEmail: firstname.lastname@example.org Mobile: 0422 604 737
Malisha Fernando, NDIS Support Coordinator
Malisha has worked in the disability sector for the last 9 years across a range of roles including employment, outreach support, group homes and now support coordination. Having been involved in the transition from block funded programs to the NDIS scheme, she understands the challenges and complexities that come with the ever-changing world of NDIS.
Work days: Monday to Friday
Amy Hale, Youth Liaison Worker
Amy manages our Youth Connection (HDYC) service.
Amy is constantly inspired by working with teenagers and young people. If you would like to connect, offer a suggestion for the program, or simply know more about what we have to offer, please contact Amy.Email: email@example.com
Mobile: 0499 031 231
Stewart Swales, Administration Coordinator
Stewart oversees the operation of our office and undertakes a wide variety of administration tasks.
Office days: Tuesday, Wednesday and ThursdayEmail: firstname.lastname@example.org
Phone: (02) 9874 9777
Alison manages our marketing and fundraising activities, both regular and one-off events. She leads Walk 4 Hope, our annual community fundraising and awareness raising event, which began in 2014 at Parramatta and Speers Point and has since grown to run in multiple locations.
Work days: Monday, Tuesday, and Thursday
Mobile: 0419 465 612
Regional Support Teams project
Michael Collins, Community Facilitator for Wollongong
Michael is a South Coast local who facilitates the Wollongong Support group and will assist in building this association's knowledge and a HD-friendly support network for the local HD community.
Contracted for 8 hours per month within the Regional Suport Teams community development project, 2021/2022.Email: email@example.com
Phone: (02) 9874 9777
Ellen is a Mid North Coast local who facilitates the Coffs Harbour Carer Support group and will assist in building this association's knowledge and a HD-friendly support network for the local HD community.
Contracted for 8 hours per month within the Regional Support Teams community development project, 2021/2022.Email: firstname.lastname@example.org
Phone: (02) 9874 9777