Community Members

Jacqui

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. […]

Kate

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, […]

Tracy

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 […]

David

Posted - February 2017 in Community Members

Hi, my name is David, I’m 50 years old and 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 […]

Sharon

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 […]

George

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 […]

Sharyn

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 […]

Aleacia

Posted - September 2015 in Community Members

Hi, my name is Leanne and my nine year old daughter Aleacia has complicated SPG3A HSP.   Aleacia is the youngest of my 5 children and when she was about 6 months old I noticed she wasn’t meeting her milestones. As she grew she could never sit unsupported, pull herself to stand or crawl other than […]

Mark

Posted - February 2015 in Community Members

Community members Mark and Dayna – father and daughter   Mark I grew up in Ferntree Gully in Victoria and am one of 6 children. Growing up I used to get told by my dad to “stop walking on your toes”. I was born with a gait issue (the only one of the kids to […]

Roger

Posted - in Community Members

My name is Roger Simpson and I am 41 years old and live in the suburb of Mount Eliza, Victoria which is on the Mornington Peninsula. I am married to Simone and have three kids, Larni (7), Ryan (5) and Paige (3). Both myself and Ryan have HSP which I was passed from my father. […]

Roger

Posted - in Community Members

My name is Roger Simpson and I am 41 years old and live in the suburb of Mount Eliza, Victoria which is on the Mornington Peninsula. I am married to Simone and have three kids, Larni (7), Ryan (5) and Paige (3). Both myself and Ryan have HSP which I was passed from my father. […]

Donna

Posted - December 2014 in Community Members

My HSP was confirmed in 2013 but it was suspected I had this condition. I am the only one in my family affected by this and have not passed the gene onto my children. I am a married 56 year old woman with three grown children and two grandchildren and work part time in a […]

Vicki & Emily

Posted - August 2014 in Community Members

Vicki and Emily’s mother, Eleni has provided an inspiring story about her daughters.   I am the mother of 2 beautiful daughters both of whom suffer from HSP recessive format (not diagnosed via testing as yet). I wanted to share how proud I am of my daughters. They are true inspirations to me and to […]

Alastair

Posted - June 2014 in Community Members

  I was born in Melbourne in 1994, which is a beautiful city. I have a stepbrother and a sister and I am the eldest. While at primary school, I was like every other kid and had no signs of HSP. In my last years at high school I enjoyed Media and Studio Art. For […]

Elizabeth

Posted - in Community Members

. Hi, I’m Elizabeth, I’m 27 years old and was diagnosed with HSP on the same day as my mum in July 2012. I grew up and have spent my whole life in Western Sydney as one of 4 girls in the family. While I had some symptoms from early on, I loved being outdoors […]

David

Posted - November 2013 in Community Members

I was born in Subiaco in 1963; a suburb that is close to Perth. I am the youngest of five children. I grew up in the Perth suburb of Yokine in a fibro house.  I first went to school at Tuart Hill Primary School. I had a suburban growing up. While at primary school, I […]

Therese

Posted - in Community Members

  I grew up in Cessnock in New South Wales’ beautiful Hunter Valley a couple of hours north of Sydney with two sisters, one 18 months older and the other 6 years younger  –  so I was the middle sister. I went to primary and high schools in Cessnock – had the usual country town […]

Col

Posted - in Community Members

As a boy I was always the slowest mover in my class and soon learnt to dodge sport times and the taunts of my classmates.  As I grew up people started noticing that my gait was unusual but they could not define the problem and I kept up with the social activities of my peers.  […]

David

Posted - December 2012 in Community Members

  I spent my childhood in Sydney before accepting a transfer to a school in Port Macquarie twenty one years ago. My very supportive wife and I built a home among the trees at Sarah’s Creek near Wauchope and have been here ever since. We have five children ranging from thirty to twenty years and […]

Merron

Posted - June 2012 in Community Members

  Merron   Hi there, my name is Merron, I’m 55, and now live at Encounter Bay with my husband (Jeff) and daughter (Kerry), a beach side town south of Adelaide.  We made a decision to sell up and retire here a few months ago, to give ourselves a change in life style.  My diagnosis […]