- The HSP Research Foundation is an Australian-based charity formed in 2005.
- The Foundation is both an Incorporated Association and a Registered Charity with Deductible Gift Recipient Status.
- It is 100% run by volunteers. There are no paid workers.
- The focus is on research, support and education for people with HSP and the people in their lives.
- Over 98% of all funds raised ever (ie. over 98c in every dollar) goes directly to fund HSP research.
- This website is the hub of our widely dispersed community.
- We are part of an HSP global community and actively collaborate with similar organisations worldwide.
Our Purpose & Mission
The HSP Research Foundation was created in 2005 to find an effective treatment for the Hereditary Spastic Paraplegias (HSPs). The Foundation is an incorporated, registered Australian charity that facilitates and funds research to find effective treatments and cures. The Foundation is also the community hub for people with HSP in Australia, creating awareness and providing information, education and support.
Our only remit is to serve the collective needs and interests of people with HSP.
To have treatments for the HSPs that are:
- highly effective
- widely available and
- readily affordable.
Who We Are
The HSP (Hereditary Spastic Paraplegia) Research Foundation is a grassroots organisation that was created in 2005 with the purpose of finding a cure for HSP – an inherited, degenerative disease affecting mainly the legs, causing muscle weakness, spasticity and severely impairing walking. The HSP Research Foundation is an incorporated, registered Australian charity that facilitates and funds research to find a cure. The Foundation is also the community hub for HSPers in Australia, creating awareness and providing support and education. Many HSPers need canes, walkers or wheelchairs to get around. Our HSP community numbers over 800, with about half that number who have the condition. We believe that what is good for anyone with HSP anywhere will probably be good for everyone with HSP everywhere, and see collaboration as a source of strength and progress for the global community of people with HSPs.
What We Do
Facilitating & Funding Research
An early focus of the Foundation was to facilitate and fund the establishment of a reliable, fast, affordable, nationally-available, genetic testing service for HSP. One of the immediate benefits is to vastly improve diagnosis, so eliminating the uncertainty regarding family members’ disease status and the negative impact that has on the wellbeing of both individuals and families. As at the end of 2015, there are three state-of-the-art, next-generation genetic testing services for HSP available in Australia, each with the capability to identify more than 50 of the known HSP mutations.
We have also facilitated and provided funding support continuously since 2008 for the research program Towards a Cure for HSP where adult stem cells derived from nasal tissue of people with SPAST/SPG4 HSP are being studied as a model of the disease. The research has delivered promising results throughout, entering a new phase in early 2013 Testing & Selecting Therapeutic Drug Candidates for treating HSP with the aim of qualifying potential drug candidates that compensate for impaired cell functioning caused by HSP gene mutations. Three candidate drugs were successfully identified and entered into two separate validation studies using HSP mice and a different type of stem cell (induced pluripotent stem cells). Drug validation studies were successfully completed in 2016.
Clinical trials to establish an effective drug treatment for SPAST HSP are a medium-term goal. Pre-clinical investigations in the form of biomarker studies to establish accurate and reliable measures of disease suitable for use in clinical trials are continuing.
As well as the quest for effective drug treatments, we are monitoring developments in gene therapies with interest and cautious optimism. We will continue to facilitate and fund the most promising research.
Developing & Supporting the HSP Community
The Foundation is also the community hub for HSPers in Australia, providing support, awareness and education – including this website. The community was established with less than 30 members in 2005 under the capable leadership of Robin Bligh whose vision is reflected in the Foundation’s tagline A better deal for HSPers, their children and their grandchildren. People with HSP, together with their families and friends constitute the HSP community and are the backbone of the Foundation, now numbering around 750 at the end of 2015.
The Foundation, through information and education, has raised the level of HSP literacy amongst community members enormously over the years. The Foundation has run workshops in major cities; communicates the latest developments in management and treatment options on at least a quarterly basis; maintains through this website a searchable and accessible first-class library and archive of usable HSP knowledge on all manner of symptoms associated with the condition; connects community members with all manner of support and resources; and personally responds to every inquiry received by e-mail or phone or both. The Foundation also facilitates social support and networking amongst community members, both in Australia and overseas. A significant percentage of community members are based outside Australia, mostly residing in countries where there is no national HSP support group. No one is turned away.
Community members are responsible for the bulk of funds raised by the Foundation, and all of this except for a few inescapable costs goes directly to fund research to find an effective treatment for the disease.
How Funds are Used
Over a period of 2 years the HSPRF collaborated with the ANZAC Research Institute of the University of Sydney to develop tests for the most common HSP genes and funded the research in the amount of $85,000.
The Foundation then turned its attention to stem cell research, giving $100,000 to fund a Pilot Study conducted by the National Centre for Adult Stem Cell Research (NCASCR) at the Griffith University-based Eskitis Institute for Cell and Molecular Therapies in Queensland, in association with the Kolling Institute of Medical Research of the University of Sydney.
Because of the scope and promise of this research, and the local availability of world-class people and facilities, the Foundation initiated this project and fostered it to the stage of implementation. It was successfully completed in 2010 with the promising results lending confidence to initiate a two-year research project over 2011/12 to discover therapeutic drug candidates to compensate for cell functioning impaired by HSP gene mutations. The Foundation gave support funding of $210,000 to this project that was also successfully completed and has led on to the current phase of work Testing & Selecting Therapeutic Drug Candidates for treating HSP with the aim of qualifying potential drug candidates for clinical trials.
The Foundation is pursuing funding from Australian philanthropic organisations, and from the Australian HSP community by direct fundraising and encouraging people to hold events and fundraise on our behalf.
In 2014 the Foundation together with our esteemed sister organisation in the USA, the SP Foundation, provided matching funding totalling $240,000 to fund the next stage of research in the program Validating Drug Candidates for treating HSP. This involves 2 separate studies, one on HSP mice and the other using induced pluripotent HSP stem cells on which to test the candidate drugs. These studies are aimed towards producing a strong application to the regulatory authority to commence clinical trials using these drugs. The Foundation has provided a further $140,000 to fund the completion of both studies, now projected at mid–2016.
An effective treatment for HSP is now within reach.
Profiles of Committee Members
- The HSP Research Foundation Inc (ABN 46 648 875 912) was incorporated as an Association (Inc 9882912) in early 2005.
- The Constitution was approved at the inaugural Annual General Meeting on June 26, 2005 and updated in 2013.
- The Australian Tax Office gave us Deductible Gift Recipient endorsement in August 2005. We are also income tax and GST exempt.