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.
Questioning disease classification systems
A mechanistically inspired classification proposed
Particular form of Spastin is toxic
Interferes with fast axonal transport
Axonal degeneration in HSP
Link between different classes of HSP proteins
SPG11 mutations observed in HSP, ALS and CMT2
Common mechanism of lipid accumulation in lysosomes
Impairment of Atlastin protein causes SPG3A type HSP
Important role in the regeneration of neurons disrupted
So-called Junk DNA not really junk
Junk DNA mutations found to cause HSP
More than 60 mutations exist for SPG3A HSP
Can’t predict symptom profile in this HSP type
New HSP genetic findings
From Mali, Norway, Germany, Qatar, Italy, Turkey, Saudi Arabia, Pakistan, USA, Poland
Balance can be improved in HSP1
Falls can be prevented
“Becoming Disabled”
How we think about disability
Unusual muscle tears in HSPer
HSP might lead to changes in muscle tissue
Dealing with chronic pain
Shared reading a novel treatment
Taking on a challenge
HSPer achieves prestigious award
HSP Research Program update June 20176
Focus on pre-clinical investigations
Happy with your neurologist or physio?
Recommend them to the HSP community
Just who is Alan Mackay-Sim?
A personal profile
Equity and access, Carers, Fundraising
Supporting HSPers in different ways
Raising awareness of HSP
‘Potato Pants’ is a great way to do it
NDIS update June 2017
Commitment to fully fund the scheme
Social get-togethers in Vic and NSW1
HSPers making it happen
US and UK HSP groups’ Newsletters
Read what’s happening in other groups
This space is for you to have your say. Email us
Winter 2017 edition of the website published 3 June
The Spring 2017 edition of the website will be published in early September
Speech difficulties with HSP5
Has anyone been to a speech pathologist?
Telling children about HSP5
If, when and how?
Medical cannabis12
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
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!