HSP Research Foundation
Welcome to the HSP Research Foundation – created in 2005 to find an effective treatment for Hereditary Spastic Paraplegia (HSP) – an inherited, degenerative disease affecting mainly the legs, causing spasticity, muscle weakness and severely impairing walking.
The HSP Research Foundation is an incorporated, registered Australian charity that facilitates and funds research to find an effective treatment. The Foundation is also the community hub for HSPers in Australia, creating awareness and providing information, education and support.
Function restored in cell samples
Both conditions autosomal recessive inheritance
Valuable resource for much-needed research
Study of mice confirms earlier findings
Impaired lipid metabolism mechanism
Pathway leads to sell organelle impairment
From China, the Middle East, Italy and France
Positive influence on quality of life
Keep the legs and feet warm
Management without pills
A potential problem for HSPers
Assessment and testing
Testing and management
Treatment with deep brain stimulation successful
HSPers meet over dinner
Planning for Clinical Trials
Mutual support group
Worrying times for people with disability
And parents taking on the challenge
Read what’s happening in other groups
This space is for you to have your say. Email us
Winter 2017 edition of the website will be published in early June.
Has anyone been to a speech pathologist?
If, when and how?
Anyone tried it for HSP?
Australian of the Year 2017
Head of the HSP Research Program, Prof Alan Mackay-Sim was named Australian of the Year for 2017 by the Prime Minister in an awards ceremony at Parliament House in Canberra in late January
Fundraising for HSP Research
Studies over 2015/16 aimed at validating drug candidates were completed successfully at the end of 2016 thus making a solid case for testing in clinical trials. The focus of the HSP Research Program is now on clinical trials, aimed at determining the extent to which a drug treatment found to be effective with human HSP stem cells in the laboratory is effective with HSPers themselves. Planning of this huge undertaking has begun and includes technical, medical, ethical, regulatory, logistical, financial and organisational aspects. Read more…
The costs associated with clinical trials can be huge and we can hope to meet only a fraction of them from fundraising, but it is essential that we play our part and do our best. We are much more likely to attract matching funding from outside sources when there is a clear demonstration of ongoing commitment to the goal by the HSP community in the form of consistent giving to support this work that is so important to us all.
Together we exceeded the 2016 fundraising target of $120,000 by almost $20,000 with a grand total for the year of $139,196. Heartfelt thanks to all who gave in 2016 for your generous support. We now need to reach $120,000 again in 2017. An effective treatment for HSP is now within reach!