Edda: Hi Sam, tell me a little bit about your story. Where did you grow up?
Samantha: I was born at the Gold Coast but I spent the first few years of my life in Asia. My dad was working for Tourism Australia. After he stopped working for them we came back to the Gold Coast. I have been there ever since. After high-school I went to university and studied business, which is where I got into marketing. Now, I work part-time doing marketing. I am also an ambassador for FARA (Friedreich Ataxia Research Association). FARA’s goal is to find a cure or treatment for my condition. As a marketing graduate, I’ve been able to help them a lot more.
E: What is the goal of a FARA ambassador?
S: Our ambassadors are a united team of patient volunteers, living with Friedreich Ataxia, who are committed to supporting FARA in finding treatment and a cure. My goal is to raise awareness through marketing.
E: What is Friedreich Ataxia?
S: Friedreich Ataxia is neurological muscle disorder. My sister had been diagnosed after she started having trouble walking. The paediatrician suggested I’d be tested as well because Friedreich Ataxia is genetic. I was diagnosed when I was 10 years old. Up until that age, I was a normal healthy child. I started having symptoms within a few years of my diagnosis. I began using a walking frame and aides at the age of 15. At the age of 19 I started using a wheelchair, five years after my diagnosis.
E: Is Friedreich Ataxia is genetic disorder?
S: Yes. There is this gene called a FXN and one in 100 people unknowingly carry it. If two people who carry the gene have a child, that child has a one in four chance of being diagnosed with Friedreich Ataxia. My parents had two children and both of us were diagnosed, which is very unlikely. In most families, one out of three children might be diagnosed.
E: What was it like being diagnosed at the age of 10?
S: I just really tried to not let it have an impact on my life. I tried to live a very normal childhood. Now that I’m older, I’m letting it have more of an impact by getting involved in FARA.
I want to make a difference and help other people with my disorder. There are about 300 people living with Friedreich Ataxia in Australia.
E: Did you have some ideas of what you wanted to be when you grew up?
S: I never really had a specific thing I wanted to be, I just wanted to do something good, and make a difference and be happy. I never thought that anything would get in the way of me being happy! I just love going out and taking my message to people and just travelling the world. In 4 weeks, I’m going to the states and I’m going to a Friedreich Ataxia conference in Philadelphia where I’m going to meet lots of people over there and do heaps of networking. I’m going to New York while I’m there with my best friend, it’s going to be awesome.
E: What are you most excited about for the future?
S: I would just like to really encourage people to get involved. FARA does heaps! In May, we are running a national fundraiser, anyone can do it. It’s called Lend Us Some Muscle, all you need is your two muscles. So I would just love more people to get involved.