Strategic Plan
The Board approved the revised Huntington’s NSW ACT Strategic Plan 2019 – 2022 on 9th November 2021.
Community Survey
2019-2020 – 2020 Analysis
2018-2019 – 2019 Analysis
Annual Reports
2021-2022 – Annual report | Financial report (audited)
2020-2021 – Annual report | Financial report (audited)
2019-2020 – Annual report | Financial report (audited)
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
2021 – Online national conference hosted by NSW/ACT Association during COVID-19 pandemic with record 413 delegates and many renowned international and Australian keynote speakers | New regional HD social worker hired for Illawarra Shoalhaven region
2020 – Consortium formed with four other State Huntington’s Associations | Dancing at the Vatican (documentary of 2017 audience with Pope Francis) screened live online nationally during COVID-19 lockdown
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 as Executive Officer
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