1800 244 735

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

  • Be the HD information channel for community members and care professionals within NSW and ACT
  • Ensure specialised HD education is available to HD community members and care professionals within NSW and ACT
  • Provide HD-specific support that improves 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

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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 4 grandchildren... Read More

Work days: Monday, Tuesday and Thursday

Email: [email protected]
Mobile: 0407 108 667
LinkedIn: https://www.linkedin.com/in/lewis-kaplan-02461026/

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Alison Weir, Head of Business Development & Fundraising

Alison manages our marketing and fundraising activities, both regular and one-off events. Alison has worked in marketing and events for over 10 years, with a focus on brand development and major events planning.

Work days: Monday to Friday

Email: [email protected]
Mobile: 0419 465 612

Administration Coordinator

Stewart Swales, Administration Coordinator

Stewart oversees the operation of our office and undertakes a wide variety of administration tasks. Stewart has a wealth of knowledge of HD and is often the first person on the phone when you call the office.

Work days: Tuesday, Wednesday and Thursday

Email: [email protected]
Phone: 1800 244 735

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Malisha Fernando, NDIS Support Coordinator

Malisha is our Senior NDIS Support Coordinator who assists all Huntington’s clients that meet the NDIS eligibility. Malisha has worked in the disability sector for the last 9 years across a range of roles including outreach support, group homes and now support coordination.

Work days: Monday to Friday

Email: [email protected]
Mobile: 0411 927 050

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Kate McNamara, NDIS Support Coordinator

Kate works within our support coordination team to service NDIS participants. Kate has experience in the disability sector working with a SIL provider and on the ground as a support worker, with her most recent role as a Support Coordinator assisting participants with various conditions, including HD.

Work days: Monday to Friday

Email: [email protected]

NDIS Specialist Support Coordinator

This role is currently vacant.

Work days: Monday to Friday

Email: [email protected]

Justine Amos, Support Services Administrator

Justine works within our support coordination team to provide administration support. Justine has previously worked in the aged care sector in administration, with her last role in a multidisciplinary allied health clinic. She is currently completing a Certificate IV in Community Services.

Work days: Tuesday to Friday

Email: [email protected]

HD Specialist

This role is currently vacant.

Work days: Monday to Friday

Email: [email protected]

Community Facilitator for Coffs Harbour

Ellen Slater, Support Group facilitator Coffs Harbour

Ellen is a Mid North Coast local who facilitates the Coffs Harbour Carer Support group.

Contracted for 4 hours per month within the Regional Support Teams community development project.

Phone: (02) 9874 9777

Click here to view our Board members