Hey all, my name is Liam. I’m 24 years old and I have HSP. My mum, Patricia, who first introduced me to the Foundation, also has HSP. I live with my wife in the Sutherland Shire. All the way through my youth and adulthood, I’ve been incredibly fortunate with the resources and inclusivity I’ve been… Continue reading Liam


I am 65 years old and have SPG 4 which is slowly progressing and I now need to use 2 walking sticks to move around. I didn’t start feeling the effects of HSP until I was well into my working life but, even then, progression was slow and I didn’t know what it was. I… Continue reading Peter


My name is Ian, and I was diagnosed with the rare disease HSP about 20 years ago. In those days, there was no support group in Australia. The knowledge I gained about the disease at the time was found on the internet relating to overseas information, mainly in America and Belgium. I am now 66… Continue reading Ian



Hi, my name’s Stu and I’m 43.  I grew up with my mum, dad and sister in Melbourne, always surrounded by pets, I developed a love of animals from an early age. After leaving secondary school I went to Melbourne Uni, Dookie Campus, where I gained an agricultural science degree. While at uni, I met my… Continue reading Stuart


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… Continue reading Wil


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… Continue reading Greg


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… Continue reading Brendon


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… Continue reading David