Charity details

Po Box 4064
Warrimoo NSW 2774
Address For Service email
Charity Size
Who the charity helps
Youth - 15 to under 25
People with disabilities
People in rural/regional/remote communities
Overseas communities or charities
Financially disadvantaged people
Early childhood - aged under 6
Children - aged 6 to under 15
Adults - aged 65 and over
Adults - aged 25 to under 65
Date established
Last reported
8 November 2020
Next report due
31 December 2021
Financial Year End

Summary of activities

Summary • Detailed planning for a Phase 1/2a clinical drug trial commenced towards the end of the financial year, made possible by a second drug dose range finding study that was successfully completed with conclusive results. • Three biomarker studies continue to progress - two are focused on compounds in blood and skin as potential markers of HSP status and progression; the third is a smartphone app study capturing signature gait/mobility data of individuals with HSP and comparing results over time. • $24,000 of Foundation funding has been invested in preclinical investigations as part of the Towards a Cure HSP Research Program in 2019/20. • In the 2019 calendar year, $117,000 came in through fundraising, just short of the $120,000 annual target. • Over the financial year, $105,000 was given by 150 community members, representing 24% of families in the HSP community. • Community member numbers have net declined by 4% from 743 to 713, with 21 new members joining and 51 no-longer-active community members (contact details no longer current). New members are largely from Australia, but with additions as well from France, Chile, the Philippines, the USA, Qatar, the UK and Lebanon. • Natural disasters have played a role in Foundation operations with two committee members facing prolonged disruption from bushfire threat over the 2019/20 summer and another two being somewhat impacted as well. The COVID-19 global pandemic is hampering and delaying research activities, however Foundation operations were only mildly impacted by the pandemic, a distinct advantage of being a virtual organisation without physical premises, doing business almost exclusively electronically. Developing the HSP Community Information, Education & Support Information, education and support for the HSP community takes on multiple forms and formats: • The website is updated every quarter with highlights of the most important recent research studies concerning both the quest for effective treatments for HSP and for the management and treatment of the symptoms of HSP, aimed at enhancing quality of life. • The website also contains up-to-date information on government policy and funding decisions with relevance to the HSP community, notably the National Disability Insurance Scheme (NDIS). There are also stories of social and human interest to community members. • The website is a resource valued by the HSP community, researchers and health professionals alike from around the world, with an ever-expanding library/archive. Statistics for the 2019/20 year: • 6,400 active users (down 17% year-on-year) • conducted 15,250 sessions (2.4 sessions/average active user over the year) • of 3 min 27 sec average duration per session • viewing 43,700 pages (7 different pages viewed/active user/year) • from 153 countries, with: o 36% of all users in the USA o 26% Australia o 9% UK o 5% Canada o 3% India o with Germany, Netherlands, South Korea, Italy and France filling out the top 10.

Charity programs

Program name Classification
Planning for Clinical Trials Brain and nervous system disorders
Developing the HSP Community Community development

Financials & Documents

Annual reporting

Title Due Date Date received Download
Financial Report 2021 31 December 2021 Pending
Annual Information Statement 2021 31 December 2021 Not yet submitted
Financial Report 2020 31 January 2021 8 November 2020
Annual Information Statement 2020 31 January 2021 8 November 2020
Financial Report 2019 31 January 2020 19 November 2019
Annual Information Statement 2019 31 January 2020 19 November 2019
Financial Report 2018 31 March 2019 15 November 2018
Annual Information Statement 2018 31 March 2019 15 November 2018
Annual Information Statement 2017 31 January 2018 21 November 2017
Financial Report 2017 No due date 21 November 2017
Annual Information Statement 2016 31 January 2017 18 November 2016
Financial Report 2016 No due date 18 November 2016
Annual Information Statement 2015 31 January 2016 4 November 2015
Financial Report 2015 No due date 4 November 2015
Annual Information Statement 2014 31 January 2015 16 May 2015
Financial Report 2014 No due date Not required
Annual Information Statement 2013 31 March 2014 19 December 2013
Financial Report 2013 No due date Not required


Title Date Reporting Year Download
Annual Report 19 November 2019 2019 Download
Annual Report 15 November 2018 2018 Download
Governing Document 21 June 2017 Download


The charity's subtype history

Purpose Start Date End Date
Institution whose principal activity is to promote the prevention or control of diseases in human beings (Health Promotion Charity)(HPC) 1 January 2014
Advancing health 1 January 2014
2012 Institution whose principal activity is to promote the prevention or control of diseases in human beings (HPC) 3 December 2012 31 December 2013
2012 Another purpose beneficial to the community 3 December 2012 31 December 2013

Registration status history

Effective Date Status
3 December 2012 Registered

Enforcement action history

There have been no enforcements for this charity.