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.
Value of stem cell models of HSP
Discovery of potential treatments
Review of status of HSP knowledge
Supports current direction towards clinical trials
Lysosome recycling problems in SPG11 HSP
More understanding of the pathway involved
HSP types and patterns similar globally
Large study in China confirms previous findings
New findings on SPG54 HSP
Mitochondria now implicated
New HSP genotypes and phenotypes
Research from China, Japan, Germany, Turkey and Australia
Survival tips for caregivers
Ask for help, take time for yourself
Daily duration stretching pays off
Improved mobility and range of motion
Lack of movement has negative impacts
Brain and nerves affected
Botox effects on kids and adults with HSP
The findings of two studies
Is muscle growth impaired in HSP kids?
Earliest age of onset are most affected
HSP clinical trial program update September 201814
Progress in clinical trial planning and preclinical studies
Results of June fundraising campaign
And looking ahead
Applying for the NDIS1
What HSPers should know
US, UK and German HSP Groups
What other groups are doing
Two fitness enthusiast brothers with HSP
Their story of coping, adaptation and support
This space is for you to have your say. Email us
Spring 2018 edition of the website published 2 September
Summer 2018 edition to be published early December
Speech difficulties with HSP7
Has anyone been to a speech pathologist?
Telling children about HSP7
If, when and how?
Medical cannabis20
Anyone tried it for HSP?
Australian of the Year 2017
Alan Mackay-Sim
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
Pre-clinical investigations leading into clinical trials are now the focus of the HSP Research Program. The aim is to find out if the drug treatment effective with HSP stem cells is effective with HSPers themselves. There are technical, medical, ethical, regulatory, logistical, legal, financial and organisational aspects to consider. Biomarker studies to find a measure for HSP are underway as is a drug dose modelling study. Consistent funding support helps attract outside funding. We need to reach $120,000 again in 2018. An effective treatment for HSP is now within reach!
