Ken Price – President
Ken is a retired finance professional. He holds an Accountancy degree from the Queensland Institute of Technology, completed an MBA through the UNSW And is a Fellow of CPA Australia. Ken is married to Helen and they have 3 adult sons and 5 grandsons.
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 tennis, swim, and regularly run to keep fit and healthy. He is a member of the local gym and undertakes 3 to 4 sessions weekly. Other interests include reading and traveling. Ken has managed the Community Development function in the Foundation for many years, including the social media presence. He was previously Secretary/Treasurer.
Scott Price – Secretary/Treasurer
Scott is currently a manager of procurement and transactional accounting, having obtained a Bachelor of Accounting from CQU as well as being a qualified CPA. Scott is married to Amanda, has 2 sons, whilst also having 2 brothers, with one of them being his identical twin.
Having noticed similarities between his gait and that of his father’s, Scott has been keen to involve himself in the Foundation and to offer his skills and services to continue the work previously, and still, being done by the founding and long term members, and those in the community.
Away from Accounting, Scott is passionate about sport (with the exception of soccer), as well as being outdoors staying active. Having 2 school aged sons usually provides more than enough of an opportunity for Scott to stay active and adventurous.
Frank McKeown – Committee
Frank grew up in Queensland where his early training and career was in the biological sciences. After further studies in the behavioral sciences, he worked as an organisational consultant for 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 this 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 from October 2009 to October 2023. For the last several years, Frank has worked pretty much full-time for the Foundation, covering HSP research planning and management; research funding; authoring and editing both technical and non-technical articles and stories for the website; community member communications; fundraising campaigns; and collaboration initiatives with clinicians, researchers and support groups globally.
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.
Greg Emery – Committee
Greg has spent all his life in Victoria and currently lives in Melbourne with his wife and three sons.
He is a specialist Anaesthetist who graduated from the University of Melbourne Medical School in 1987 and completed his anaesthetic training through St Vincent’s Public Hospital, Melbourne. He now works at many hospitals throughout Melbourne providing anaesthetic services for numerous surgical specialties.
Greg’s father had an unusual gait, but no cause could be found when reviewed by a neurologist and multiple investigations. It wasn’t until Greg’s brother also developed an unusual gait that it became apparent that there was HSP in the family.
When not at work Greg enjoys time with his family, watching and going to AFL games to see Hawthorn play, trying to play golf and going to beaches down at Phillip Island.
After joining the HSP Research Foundation in 2020, he is hoping he can further assist with the amazing work that the committee has thus far achieved.
Christine McCorkell – Committee
Christine has an entrepreneurial spirit along with 15 years of experience in storytelling, branding, marketing, and business development, having graduated from Swinburne University in 2004 with a degree in Business Marketing. She currently fulfils the role of Marketing Manager in a commercial architectural practice based in Melbourne. She is excited about being newly involved in the HSP Research Foundation, having served on the committee previously over 10 years ago.
Born with Hereditary Spastic Paraplegia, Christine’s disability progressed in her adolescent years, but never held her back from chasing her dreams. She continues to walk differently in this life whilst positively keeping active and strong. Christine continues to learn more about how to better manage the condition and strives to help others along the way.
Inspired by conscious living, family, wellbeing inside and out, architectural design and all things green, she hopes she can add value to fellow HSPers, as well as others in the HSP community, and in the broader community as well.
Stuart Arms – Committee
Stuart was previously on the Foundation Committee over a decade ago and once again now finds himself in the position to contribute.
Stuart grew up in Melbourne and studied agricultural science at university. He lives in West Gippsland on a dairy farm with his family. After years of working in animal nutrition, Stuart now works on the farm.
He has SPG7 HSP, relying on a walking stick and wearing ankle foot orthotics to get around. He believes the importance of being positive is paramount.
Ted O’Hare – Committee
Ted is a retired IT professional with experience in the manufacturing and health industries. Ted grew up in New Zealand and moved to Melbourne in 1987. He is married, has 4 children and 3 grandchildren.
Ted was diagnosed with HSP in 2005 and it has progressed to where he now has to use a wheelchair for mobility. After Ted retired from full time work, he authored a book about his journey since showing symptoms of HSP and the impact this has had on himself, his family, and other people who know him, or complete strangers
Ted is a musician and plays trombone in two big bands in Melbourne. Ted has also played in some orchestras in and around Melbourne as well as several other bands across Victoria. Ted was also a board member of the Dandenong Ranges Music Council for 7 years and resigned from the role in 2024.
Ted maintains his fitness by attending a local Gym and has a personal trainer who works with him to ensure he is physically capable of pushing himself in his wheelchair over various terrains.
This is Ted’s second year on the Foundation committee and has interests in living with HSP and the NDIS.
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.
________
Margaret Flood – Committee Emeritus
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 to the Secretary role. Margaret stood down from both executive roles at the 2016 AGM, relinquished her role from the Committee in 2023 but remains an active Member.
Hi the website was updated every quarter but I am having difficulty finding the latest update? Has the address changed?
Editor’s note: Quarterly updates on the current website ceased with the publication of the September 2023 edition. A new website is under development where the focus will be more on living with HSP. There will also be a shift to more communications via the Foundation Facebook page https://www.facebook.com/HSPResearchFoundation