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

  • 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

Lewis Kaplan B&W

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/

Community Programs Officer

Amanda Dickey, Community Programs Officer

Amanda manages our Community Support Groups and Therapy Services. Amanda's family is greatly affected by Huntington's Disease. Inspired by their strength and sacrifice, she has chosen to advocate for HD.

Work days: Tuesday, Wednesday and Thursday

Email: [email protected]
Mobile: 0456 013 612

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: (02) 9874 9777

Amy Hale, Youth Social 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 make contact.

Work days: Monday to Friday

Email: [email protected]
Mobile: 0499 031 231

photo of Alison Weir

Alison Weir, Fundraising & Marketing Coordinator

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, Tuesday and Thursday

Email: [email protected]
Mobile: 0419 465 612

Giselle from Huntington's NSW ACT staff

Giselle Beaumont, NDIS Senior Support Coordinator

Giselle is our Senior NDIS Support Coordinator who assists all Huntington’s clients who meet the NDIS eligibility. Giselle's 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 Friday

Email: [email protected]
Mobile: 0422 604 737

photo of Malisha Fernando

Malisha Fernando, NDIS Senior Support Coordinator

Malisha works within our Support Coordination team to service NDIS participants. 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.

Work days: Monday to Friday

Email: [email protected]
Phone: (02) 9874 9777

photo of Kate

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 Supported Independent Living 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

Phone: (02) 9874 9777

Julie Leto, HD Counsellor

Julie is our specialist HD Counsellor, with a passion for working with the Huntington's community. Julie is an advocate for people with a disability and has strong social justice principles. As a qualified Social Worker, Julie also brings to her role a Master of Family Studies and a Master of Counselling and Psychotherapy.

Work days: Monday

Phone: (02) 9874 9777

Regional Support Teams project

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

Community Builder Wollongong (vacant)

We are looking for a South Coast local to facilitate the Wollongong Support group and to assist in building the 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.

Email: expressions of interest to [email protected]
Phone: (02) 9874 9777

Click here to view our Board members