How we know we are succeeding


The Board approved the Huntington’s NSW ACT Strategic Plan 2019 – 2022 on 12 November 2019.


2018-2019 – Annual report | Financial report (audited)

2017-2018 – Annual report | Financial report (audited)

2016-2017 – Annual report | Financial report (audited)

2015-2016 – Annual report | Financial report (audited)

2014-2015 – Annual report | Financial report (audited)

2013-2014 – Annual report | Financial report (audited)

2012-2013 – Annual report | Financial report (audited)

Key Milestones

2019 – Lewis Kaplan appointed as CEO | NDIS Support Coordination service launched | New website for Huntington’s NSW ACT

2018 – Regional Family Support Service de-funded by NSW FACS | Robyn Kapp OAM re-retires

2017 – Hidden No More – huge international delegation of people with HD meet the Pope at the Vatican | Association changes name from Australian Huntington’s Disease Association – NSW to Huntington’s NSW ACT Inc.

2016 – National conference held in Melbourne | Second national HD services mapping

2014 – First Walk 4 Hope | National conference held in Perth

2013 – Lottie Stewart Hospital closed and replaced by Sister Maria Cunningham Centre at St Joseph’s Hospital, Auburn as specialist residential centre for people with HD

2012 – New website for NSW | Robyn Kapp returns as Executive Officer  | HDYO – Huntington’s Disease Youth Organisation launched (international)

2011 – International Huntington’s Association World Congress held in Melbourne | Documentary – The Inheritance released | First National HD Awareness Week

2010 – National conference held in Brisbane

2008 – Sydney Carers Group established

2007 – Camellia Cottage closes due to inadequate funding | Robyn Kapp OAM retires as Executive Officer | National conference held in Adelaide

2006 – National conference held in Melbourne

2005 – First national mapping of HD services

2004 – NSW Regional Family Support Service funded

2000 – NSW HD prevalence study undertaken in 1996 by Dr Elizabeth McCusker et al published

1998-99 – Association funded to establish Camellia Cottage, a small residential unit for people with HD in the Hunter region

1997 – International Huntington’s Association World Congress held in Sydney

1996  – Association purchases premises at West Ryde: named Elsie Court Cottage after benefactor

1993 – HD clinic moves to Westmead Hospital | HD Nursing home moves to Lottie Stewart House | HD gene identified so genetic testing becomes available and new research starts

1988 First NSW Health grant | First nursing home for people with HD at Lidcombe Hospital

1983 – Robyn Kapp appointed as first paid staff member | First representation at International Huntington’s Association

1982 – HD Service established at Lidcombe Hospital | First family seminar | First holiday camp

1976 – Association incorporated

1975 – Inaugural meeting at Lidcombe Hospital

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