Community Members


Posted - February 2021 in Community Members

I’m in my late 50s and have an undiagnosed, untreatable spinal-cord problem which is causing progressive paralysis, with both of my legs virtually paralysed now.  I was fortunate to some degree that I had late onset problems as I have been able to have a great life so far. I’m happily married to my lovely […]


Posted - December 2020 in Community Members

I was born in Melbourne as one of six children, a set of twins at the top and another at the bottom. I don’t know how my parents did it, six children under six years old. My wife Julie and I had three children in six years, which was more than a handful. Our Christmas […]


Posted - in Community Members

I was born in New Zealand where I grew up in a large family. My wife, son and I moved to Australia when I was 28 years old and we settled in the Blue Mountains where we have lived for the past 46 years. I was a Primary school teacher, which I loved but at […]


Posted - September 2020 in Community Members

Hi, my name is David. I grew up in Canberra. I have led a somewhat normal active life, but HSP has now very much slowed me down. When I was about 15 I had surgery on my right foot to treat a condition known as Pes Cavus. I didn’t understand at the time what it […]


Posted - February 2020 in Community Members

Hi All, My name is Ken and I have had HSP probably all my life, wearing out the toes on school shoes and the front part of my tennis shoes obviously as a result of HSP. My father and his mother clearly had HSP but were never diagnosed and died without knowing the reason for […]


Posted - in Community Members

Hello, I’m Margaret. My husband, Brendon, who has had HSP since about 2002, and I joined the HSP Research Foundation not long after it went online.   I grew up in a small village in New Zealand, attended high school in the nearby city, obtained a degree at Victoria University (Wellington) and taught secondary school […]


Posted - November 2019 in Community Members

I was born in London and emigrated with my parents to Australia in 1960.   After a career as a hairdresser and salon owner I wanted a change in profession which led to 25 years working and volunteering for an NSW Wildlife Organisation, writing training packages, training and evaluation of members and creating an online […]


Posted - June 2019 in Community Members

‘Hi all. My name is James and I have had HSP for a number of years. It kicked off in 2008 and a blood test in 2011 confirmed that I have HSP SPG4. I am from the UK and I was one of the last $10 tourists! I travelled extensively round Europe in my teens […]


Posted - February 2019 in Community Members

Ron who is in his early 60s is from Geelong and has HSP. Inspired by his wife Ellenor’s achievements and success in rowing, Ron recently took up the sport. Ellenor competed in multiple events at the World Masters Games in Cambridge New Zealand in April last year. Ron watched a single rower with a disability […]


Posted - December 2018 in Community Members

HSP. I wish it meant I had a Halal Snack Pack that I was eating and enjoying. But no, HSP is what I was diagnosed with in 2015. A lot of different people kept on asking me if I was okay because I had a limp when I walked. This was back in 2007. At […]


Posted - September 2018 in Community Members

Hi, I’m Julian from Sydney. I’m 35 years old and all my life have been quite active. As a kid I played soccer and practiced martial arts. In my mid-twenties I spent a year in Canada snowboarding.   Seven years ago I was still playing AFL when I had to give it up at the […]


Posted - February 2018 in Community Members

Dave’s family moved to the Port Stephens area when he was 10 and he has been there ever since. He is both a busy and a modest man, so this profile had to be written about him rather than by him.   Dave has always loved hard work. As a younger man he got experience […]


Posted - in Community Members

I am living in Canberra with my husband Greg and dog Jesse. I was diagnosed with HSP SPG 7 in October 2016. I was living a really full life very involved with my children at their school in all their activities.   I was having spasms in my right side of my face, eye and […]


Posted - September 2017 in Community Members

Hi, my name is Jacqui. I am married to an awesome cowboy. We have our own business, running livestock and selling meat in the Yarra Valley in Victoria. I am involved in the children’s school: on the Advisory Team, Parents and Friends committee, working in the tuckshop and the class rooms which I really enjoy. […]


Posted - June 2017 in Community Members

I had a full career as an able-bodied actor for over 20 years, performing in everything from classics to musicals, and TV shows including Prisoner, Blue Heelers, Big River, Pygmalion, Buddy and Hotel Sorrento. I also worked as the main promotional voice-over artist for the ABC in Melbourne and have directed festivals for Melbourne Fringe, […]


Posted - in Community Members

Hi, I’m Tracy. I had a normal upbringing and school life in Melbourne’s outer eastern suburbs prior to the mature age onset of HSP, as mine was. As a young child and into my teenage  years, I enjoyed training for and playing Netball – a legacy which our two daughters have carried on. I was […]


Posted - February 2017 in Community Members

Hi, my name is David. I grew up in Canberra. I have led a somewhat normal active life, but HSP has now very much slowed me down. When I was about 15 I had surgery on my right foot to treat a condition known as Pes Cavus. I didn’t understand at the time what it […]


Posted - June 2016 in Community Members

Hi there, I’m Sharon and have had HSP symptoms all my life, having many “medically guessed” diagnoses over the years such as Clicky Hips, Cerebral Palsy and Spina Bifida. Finally in my early 50’s, I got myself genetically tested and tested positive to the SPG3A gene. Mind you though, Spina Bifida was always easier to […]


Posted - in Community Members

Hi, I’m George, 48 years old and was diagnosed with Hereditary Spastic Paraparesis back in December of 2013. I have had back problems for the last ten years. Initially when i had back problems I used to get Spasticity in my lower back on most occasions that prevented me from going to work for a […]


Posted - in Community Members

My name is Sharyn. I’m originally from NZ having arrived way back in 1979! It was always my intention to move back there but work, children, pets and life in general have seen me enjoy a lovely life in Sydney near Manly Beach.   Ironically, my 24 year old daughter, having always said that I […]