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.
Promising treatment found for SPG5 HSP
Atorvastatin reduces toxic fatty compounds in the brain
Next Generation gene testing telling a story
Much of HSP genetics still not understood
HSP differences in identical twins
More than genetic inheritance at play
Brain activity levels potential diagnostic for SPG4 HSP
Differences with disease severity identified
SPG2 HSP mechanism described
Loss of specialised support cells the cause
New HSP gene discovered
SERAC1 deficiency causing complex HSP
New HSP genotypes and phenotypes
From China, Japan, Italy, Brazil, UK, Korea, USA, Israel, Iran, Moldova, Greece, France, Belgium, Germany, UAE, Russia
SPG7 HSP more common in Australia
Genetic testing providing insight
Are you planned for an emergency?
Be your own ‘first responder’
2017 Survey of HSPers now available
Focus on jobs, walking, well-being and pain
Improving balance to prevent falls2
Focus on front to back sway
Large gait study of HSP, CA and PD
Confirms HSP gait as highly variable
HSP research program update December 20174
Preclinical studies address the big questions
First wheelchair backflip by young HSPer1
Inspires a catchy Christmas song
Getting the most out of the NDIS1
Do your homework!
Aerobatics wing walker and 10km fun run
2 HSPers raising money for charity
International Day of People with Disability Sunday December 3
Events nationwide
NDIS update December 2017
Can they get it right?
This space is for you to have your say. Email us
Summer 2017 edition of the website published 2 December1
The Autumn 2018 edition of the website will be published in early March.
Speech difficulties with HSP5
Has anyone been to a speech pathologist?
Telling children about HSP5
If, when and how?
Medical cannabis16
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 have commenced as has a drug dose modelling study. Consistent funding support helps attract outside funding. We need to reach $120,000 again in 2017. An effective treatment for HSP is now within reach!
