1800 244 735

Helpline (02) 9874 9777

About Us

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 Program and the Westpac Foundation. Please see our Funding page for more information about our funding and finances.

Our Focus Areas - Information, Education, Advocacy and Awareness

Our Goals

  • 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

Key Milestones

A graphical representation of the history of Huntington's NSW ACT

Our Advocacy


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
Huntington's staff and supporters

Our Team

Lewis Kaplan, Chief Executive Officer

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 3 grandchildren... Read More

Email: lewis.kaplan@huntingtonsnsw.org.au
Mobile: 0407 108 667
LinkedIn: https://www.linkedin.com/in/lewis-kaplan-02461026/

Amy Hale, Youth Liaison Worker

Amy joined us to develop and facilitate our new program, Huntington's Disease Youth Connection (HDYC).

Amy is contantly 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: amy@huntingtonsnsw.org.au
Mobile: 0499 031 231

Amanda Dickey, Community Programs Officer

Amanda manages our Community Support Groups and Therapy Services.

Email: amanda@huntingtonsnsw.org.au
Phone: (02) 9874 9777
LinkedIn: https://www.linkedin.com/in/amandadickey1/

Stewart Swales, Administration Coordinator

Stewart oversees the operation of our office and undertakes a wide variety of administration tasks. Stewart is in the office on Tuesdays, Wednesdays and Thursdays.

Email: stewart@huntingtonsnsw.org.au
Phone: (02) 9874 9777

Pauline from Huntington's NSW ACT

Pauline Keyvar, Fundraising and Marketing Consultant

Pauline is responsible for our marketing and fundraising activities, in particular Walk 4 Hope, our annual community fundraising and awareness raising event.

Email: pauline@huntingtonsnsw.org.au
Mobile: 0409 363 987

Giselle from Huntington's NSW ACT

Giselle Beaumont, NDIS Support Coordinator

Giselle is our Senior NDIS Support Coordinator (full time) who assists a mix of NDIS participants with HD. Her knowledge of both HD and the NDIS, and her passion for social justice, allows her to fully understand the needs of our community.


Email: giselle@huntingtonsnsw.org.au
Mobile: 0438 585 932

Click here to view our Board members

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