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.
Biomarker discovery for SPG5 HSP
Two cholesterol derivatives identified
DDHD1 and DDHD2 HSP genes investigated
Lipid metabolism dysfunction the common cause
Adaptor Protein (AP) genes linked with 5 types of HSP
Mechanisms & processes described in 3 research studies
Rare form of SPG4 HSP misdiagnosed
Early-onset symptoms “misleading”
New HSP mutation found in FA2H gene
Early-onset and rapid progression SPG35 HSP
“You’ve got HSP …”2
“There is nothing that can be done”
Mobile phone app for wheelchair users
Help with travel planning and getting around
Bike Skills Program for HSP kids1
Monash Children’s Hospital, Victoria
Being cold makes walking with HSP difficult
But does warming the legs help?
Improving balance … what works better?2
Real-world tasks or Virtual Reality games?
Bone density lower in HSPers
Testing and treatment recommended
HSP clinical trial program update March 20186
Progress in preclinical studies
HSP community giving in 20175
Yikes, what just happened!
Support for young HSPers
from Singapore, Ireland and Dubai
An Actor and an Athlete
2 HSPers hitting the big time
US Synapse and UK Newslink newsletters
Read what other groups are doing
This space is for you to have your say. Email us
Autumn 2018 edition of the website published 27 February
The Winter 2018 edition of the website will be published in early June
Speech difficulties with HSP5
Has anyone been to a speech pathologist?
Telling children about HSP5
If, when and how?
Medical cannabis17
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!
