Hereditary Spastic Paraplegia (HSP) Research Foundation

The HSP Research Foundation is an Australian organisation formed in 2005.
  • It is both an Incorporated Association and a Registered Charity.
  • It is 100% run by volunteers. There are no paid workers.
  • The focus is on research, support and education.
  • Over 95% of all funds raised (ie. over 95c in every dollar) go directly to fund HSP research in our Towards a Cure for HSP research program.
  • Our website is the hub of our widely dispersed community.
  • We are part of an HSP global community and actively collaborate with similar organisations worldwide.
Who We Are
The Hereditary Spastic Paraplegia (HSP) Research Foundation was created in 2005 with the purpose of finding a cure for HSP – an inherited, degenerative disease affecting mainly the legs, causing spasticity and severely impairing walking.  Many HSPers need canes, walkers or wheelchairs to get around.  The HSP Research Foundation is an incorporated, registered Australian charity, which has successfully funded research into genetic testing to identify specifically which of numerous possible gene mutations is causing the disease in each case. We are now funding a research program Towards a Cure for HSP using adult stem cells, and are at the stage of initiating a project to discover therapeutic drug candidates to compensate for impaired cell functioning caused by HSP gene mutations.
 
What We Do
An early focus of the Foundation was to facilitate 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.  By far and away our main focus now is our research program Towards a Cure for HSP. The Foundation is also the community hub for HSPers in Australia, providing support, awareness and education – including this website and annual Workshops in different cities.
 
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 $84,000.
 
The Foundation then turned its attention to stem cell research, raising $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 is now complete, yielding promising results and lending confidence to pursue a new research project for 2010/11 to discover therapeutic drug candidates to compensate for cell functioning impaired by HSP gene mutations.
 
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.
 
Purpose
Paramount in the Constitution is the purpose statement. Objects and purposes of the association are:
  • As its principal activity, to promote the prevention and/or control of Hereditary Spastic Paraplegia (HSP) in human beings and without limiting the foregoing.
  • To promote research into the detection and prevention of the disease of HSP.
  • To advance genetic detection, control, prevention and alleviation of suffering for people with HSP.
  • For the above purposes to maintain a gift fund into which gifts and any money received will be paid.
 
 
 

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OTHER WAYS TO HELP

The HSP Research Foundation is an Australian organisation formed in 2005.
  • It is both an Incorporated Association and a Registered Charity.
  • It is 100% run by volunteers. There are no paid workers.
  • The focus is on research, support and education.
  • Over 95% of all funds raised (ie. over 95c in every dollar) go directly to fund HSP research in our Towards a Cure for HSP research program.
  • Our website is the hub of our widely dispersed community.
  • We are part of an HSP global community and actively collaborate with similar organisations worldwide.
Who We Are
The Hereditary Spastic Paraplegia (HSP) Research Foundation was created in 2005 with the purpose of finding a cure for HSP – an inherited, degenerative disease affecting mainly the legs, causing spasticity and severely impairing walking.  Many HSPers need canes, walkers or wheelchairs to get around.  The HSP Research Foundation is an incorporated, registered Australian charity, which has successfully funded research into genetic testing to identify specifically which of numerous possible gene mutations is causing the disease in each case. We are now funding a research program Towards a Cure for HSP using adult stem cells, and are at the stage of initiating a project to discover therapeutic drug candidates to compensate for impaired cell functioning caused by HSP gene mutations.
 
What We Do
An early focus of the Foundation was to facilitate 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.  By far and away our main focus now is our research program Towards a Cure for HSP. The Foundation is also the community hub for HSPers in Australia, providing support, awareness and education – including this website and annual Workshops in different cities.
 
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 $84,000.
 
The Foundation then turned its attention to stem cell research, raising $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 is now complete, yielding promising results and lending confidence to pursue a new research project for 2010/11 to discover therapeutic drug candidates to compensate for cell functioning impaired by HSP gene mutations.
 
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.
 
Purpose
Paramount in the Constitution is the purpose statement. Objects and purposes of the association are:
  • As its principal activity, to promote the prevention and/or control of Hereditary Spastic Paraplegia (HSP) in human beings and without limiting the foregoing.
  • To promote research into the detection and prevention of the disease of HSP.
  • To advance genetic detection, control, prevention and alleviation of suffering for people with HSP.
  • For the above purposes to maintain a gift fund into which gifts and any money received will be paid.
 

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