Frank grew up in Queensland where his early career was in soil conservation and sustainable land use. He changed direction and has been an organisational consultant for the past 25 years, specialising in major change initiatives, mainly with mid-sized and large corporations. He is a published author and has taught at Masters’ degree level in his field.
In 2004, after 15 years of living in the USA and working in many different countries, Frank returned to Australia. He has been the Foundation’s consultant since the HSPRF formed in 2005, and its President since October 2009.
Frank enjoys everything outdoors, and anything involving either a ball or the water. He gained level II qualifications in Sports Medicine during his competitive sporting days, and this fuels his interest in how HSPers can maintain and manage their mobility. He has a very dear and long-time friend who has HSP.
Secretary & Treasurer
Ken has recently retired from the Commonwealth Bank as an Executive Manager in its national Audit and Assurance division. He holds an Accountancy degree from the Queensland Institute of Technology and completed an MBA through the UNSW. Ken is married to Helen and they have 3 adult sons.
Ken was diagnosed with HSP after his GP noticed an unusual gait during a cricket game their sons were competing in. On this revelation, Ken then realised that a number of his late father’s family were similarly afflicted as was his father.
Ken’s interests are his family and he has adopted a ‘never say die’ approach to HSP by continuing to play competitive tennis and regularly runs to keep fit and healthy. He has completed a number of half marathons and plans to continue as an annual undertaking at the Gold Coast Marathon each year. Other interests include reading and travelling. Ken has managed the Community Development function in the Foundation for many years, including the social media presence. He has now also taken on the roles of Secretary and Treasurer.
Margaret grew up in New Zealand and in 1974 migrated with her husband and son to Australia. Since then they have lived in Warrimoo in the Blue Mountains, west of Sydney. She was a Mathematics teacher for many years before returning to university to obtain a Graduate Diploma in Computing which led to a second 18 year career with IBM as a Business Analyst and Project Manager.
Now that she has retired, she works with her husband Brendon, who has HSP, on extensive, ongoing house and garden renovations, participates in U3A (University of the Third Age) activities, fights a battle with the possums intent on raiding her vegetable garden and enjoys more time for various crafts. In her spare time she manages the family finances, tries to maintain an exercise program (she says: “the spirit is willing but the flesh is weak!”), attempts cryptic crosswords, bakes the family’s bread, and plans the next holiday.
When Brendon was diagnosed with HSP, they joined the HSP Research Foundation, and since 2011 Margaret has been developing and managing the Foundation’s Contacts Management System. She was appointed to a Committee position in the office of Treasurer in early 2014, then added the Secretary role. Margaret stood down from both executive roles at the 2016 AGM and remains an active Committee Member.
Chris grew up in Victoria in a small, close family, doing all the normal things that kids do.
Upon joining the workforce, Chris worked in different parts of the banking and finance industry for many years. Her interests include travel, sports, theatre, shopping and dining, all of which are in abundant supply and easily accessible in Melbourne.
Since transitioning from full-time work, Chris has chosen to give back to the community through part-time volunteer work and has developed a passionate interest in HSP after seeing the challenges faced by a close relative.
She is a proactive fundraiser for HSP research and has further contributed in the roles of Foundation Secretary and Treasurer.
Robin Bligh (1935 – 2016)
Founder & 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 support 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.
Robin oversaw the establishment of the first ever genetic testing service for HSP in Australia and the HSP stem cell pilot study that established the vital proof-of-concept. Robin stood down from the role of President in late 2009 due to failing health, but continued as Vice President for a time, then provided advice to the Committee until early 2016.
After graduating in Agricultural Science from the University of Queensland, Robin commenced a corporate career which included 6 years as CEO of Coopers (animal health) and concluded in Chicago as a Vice-President. Upon return to Australia he became the Government appointed Chairman of the Meat Research Corporation and then Chairman of the 18 member Meat Industry Council which led the meat industry plan development and subsequent change. At the same time he owned and managed a 100 hectare cattle property in the Gloucester district of NSW that was his pride and joy.
Robin is survived by his wife, Jan, 3 sons and 5 grandchildren.