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.
Different types found
Potassium ion channel dysfunction
Spastin and Atlastin mechanism investigated
Lipid droplet metabolism important
Mitochondrial impairment the cause
Multiple associated complications
From Hungary, Sudan, Australia and China
Mild impairment is widespread
Gains in walking speed and hand dexterity
Focus on fatigue
Two new videos available
Complications need management
New knowledge gained
What are the chances?
Founder and Inaugural President
Queensland’s Australian of the Year candidate
Planning for Clinical Trials
Dedication and inspiration
Animals helping HSPers
Trial phase shows NDIS is working
and a ‘Rare Song’ from Norway
This space is for you to have your say. Email us
Autumn 2017 edition to be published in early March.
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!