Founder and Inaugural President
When Robin learned that there was little known or being done about the disease HSP that his daughter-in-law had just been diagnosed with, and that his grandchildren were at risk of inheriting, he did something about it. Mainly, he did a lot of hard work, but there are two remarkable things he did that reflect Robin’s conceptual ability and vision.
The first was to establish a Foundation for Hereditary Spastic Paraplegia in 2005 with a dual role – a support group for people with HSP and a research foundation to find a cure – serving immediate needs and giving hope. As he said in his own words that became the tagline in the Foundation logo “a better deal for HSPers, their children and their grandchildren“.
The second remarkable thing was his courageous decision to back a new way of studying neurodegenerative disease using human stem cells right from the start rather than the standard pathway using laboratory animals that had not led to much success with these sorts of diseases over quite a long period of time.
The success and impact of that decision can be summed up by what was said on a conference call with our US counterparts in late 2013. The President of the Spastic Paraplegia Foundation in the USA commented at one point “it seems like you guys are now leading the pack in HSP research” and a fellow committee member chimed in “yes, and by quite a stretch”.
Early on in the Foundation’s life, Robin headhunted a brilliant researcher Prof Alan Mackay-Sim. Testament to Robin’s judgement is the fact that Prof Mackay-Sim has just received the nomination from the State of Queensland for Australian of the Year. The HSP research program has enjoyed remarkable success to the extent that the next step is testing promising drugs in clinical trials, and this just 8 years after Robin established the pilot study… truly astounding progress.
Prof Mackay-Sim said:
Please pass on my warmest condolences to Robin’s family. I really liked Robin and enjoyed his company when we met. I am eternally grateful for the decision he made and led the Foundation to support our research.
Robin has a lasting legacy, being behind the discovery of new knowledge about the disease, and the aspiration and realistic hope created in the hearts and minds of people with HSP. There is a real chance that what Robin started will allow hundreds of thousands of people with HSP worldwide to eventually enjoy a much improved quality of life.
Some people are not easily replaced. Members of the HSP community owe Robin a lot and we will all miss him dearly.
Robin is survived by his wife Jan, his brother Graham, his children Greg, David and Andrew, his daughters-in-law Penny and Therese, and his adoring grandchildren Adam, Josh, Sophie, Sam and Matt.