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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… Continue reading Ken

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… Continue reading Margaret

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… Continue reading Diane

‘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… Continue reading James

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… Continue reading Ron

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… Continue reading Matthias

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… Continue reading Julian

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… Continue reading Dave

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… Continue reading Suzie