Brand Ambassadors

Meet the Team

Get to know our inspiring fara Ambassadors by reading their stories below.  Discover how they have dealt with their FA diagnosis and gone on to live full, fantastic lives. We would like to thank our Ambassadors for their continued awareness and fundraising, advocacy and support of all things fara and FA. Their positivity and willingness to share their stories and help others in the FA community is greatly admired and appreciated.

  • Hi, my name is Leah Alstin and I live in Geelong, Victoria. I was born in 1983, and I am married with two beautiful young children. I was diagnosed with Friedreich’s Ataxia at the age of 17.

    When I was around 15, I started to ‘slow down’ when playing sport, something I loved.

    At 17 I felt off balance when going downstairs so my mum took me to the doctor and the rest is history.

    I went to university and studied primary school teaching. I partied hard and did all the things that a young girl does. I tried to block FA out as much as I could, however it was there! In my mind all the time. I was afraid of what the future may hold. I met my partner, got married, had our children and then I started to willingly allow FA into my life. I now use a walking frame and have learnt to be kind to my body. It’s been a long process, but I feel I am finally at peace (kind of) with FA and life is so much easier! I am so honoured and proud to be a fara ambassador. The future is exciting!

  • My name is Ashlee, I’m 32 and was diagnosed with FA when I was 28. I developed symptoms of FA in my late teens/early twenties.

    I live in Melbourne, work full time and try to stay fit and active by doing Pilates twice a week. I regularly visit an acupuncturist and get remedial massages to help with the symptoms of FA. I’m also looking at introducing hydrotherapy into my exercise routine. Keeping busy has helped to keep me healthy and on my feet.

  • My name is Samantha Dwyer, but everyone calls me Sam or Sammy and I live on the Gold Coast, Queensland. I am 25 and I was diagnosed at 10 years old following the diagnosis of my older sister. We have no other siblings, so we often say our parents hit the jackpot with the two of us having FA!

    At the time of diagnosis, I was showing no symptoms but after investigation we found I had scoliosis and I had a spinal fusion. I started having trouble walking within a few years and by the age of 15 I had to get a walking frame. Dealing with the onset of FA during high school is difficult (understatement of the year) but it shaped me into the person I am today.

    I was very stubborn (I think it’s an FAer trait…) and refused to use a wheelchair for a long time because I wanted to keep my independence. However, at 19 I finally bit the bullet and started using a wheelchair. It was challenging to get used to and be ok with it, but it allowed me to go to university and start fulfilling my dreams of travelling overseas! After graduating, I worked in my parent’s travel agency and then marketing. I started my own business of social media marketing. Now I do content creation – blogging, making videos, etc. I also just finished writing my autobiography. I live independently in the city. I love the gym, my little dog and rock climbing. I am so proud to be a fara ambassador because I know the things we can achieve together are endless.

  • Growing up, there was a question that really bugged me – what was it that I was doing differently to everyone else? There must have been a trick to life in general that I just didn’t get. The answer stared out at me from every tv show and movie on in the nineties - I was a nerd. I was uncoordinated, I fell a lot, I loved to read, physical effort was something I avoided like the plague. I didn’t have glasses but I did use an inhaler for a month when I was six. I was hopeless at sport but I was really book-smart. I was a nerd.

    When I was ten my mum was convinced that I must have had some kind of stress induced asthma. There were doctors’ appointments and tests, and then a diagnosis of hypertrophic cardiomyopathy. Aha! That must have been tied to the clumsiness – kinda hard to be coordinated when your heart is making you tired … right? But just before my eleventh birthday I got the cold, that either turned into, or actually was, Guillain–Barrè syndrome, a rare virus that causes the immune system to attack the peripheral nerves. During the recovery process, I was getting a great deal of attention from neurologists. One noticed that once I had got back to normal – but my normal wasn’t actually normal.

    Fortunately, earlier that year a blood test had been developed for Friedreich’s Ataxia. It was revealed that my parents each carry the FA gene, my younger brother didn’t get the FA gene from either of them, but I got the FA gene from them both. The doctor gave me a life expectancy not far past 21. At 11 that seemed ages away, in my teens it seemed abstract, and at 34 - with 2 uni degrees, travelling and volunteering - I’m planning on a blowout 42nd birthday celebration. Having FA has me living a very imbalanced life physically and emotionally. FA can claim the physical wobbles, however I lay claim to how I’ve reacted to them. The highs and lows.

  • My name is Caitlin Maynard, and I live in Sydney, NSW. I was born in Somerset, England in 1995, and have lived all over the world since. I moved to Sydney in 2018 with my parents and boyfriend and immediately loved how friendly and accessible it is here. I was diagnosed with Friedreich’s ataxia in 2013, after showing symptoms for a little over two years. The appointment where I was told my diagnosis was the first time me and my family had heard of FA.

    I was diagnosed a few months after I graduated from high school, and one month after I started university. The shock of being diagnosed with FA stopped me in my tracks a bit and I became unsure about what I wanted to do and study, so I left university and moved back in with my parents.

    Before my diagnosis and as I grew up, I participated in sports and drama programs. Most of that has stopped now that I am more wheelchair dependant, but I am still managing to do lots of physio and Pilates and even some writing.

    I started showing signs (mainly fatigue and balance loss) when I was 16 and my family was living in London. We were living in a house with four stories, which wasn’t easy for someone who was having an issue with stairs but didn’t know why. My sister and I had rooms on the top floor, and the kitchen was sixty stairs away from the bedroom! (Maybe the fact that I always counted how many stairs I had to go up and down was another sign...) I would always text my parents asking about meal times instead of going up and down the stairs. I managed to find little shortcuts like this to try and conserve my energy and possibly conceal how exhausted I was.

    I am now living in Sydney with my wonderful parents, my great partner, my sweet cat Magnolia, and my new Aussie pup Mr. Bojangles!

  • Hello, my name is Nick Rousch and I live in Wollongong NSW. You have probably heard Professor Martin Delaytcki saying he has seen an ‘athlete’ with the Friedreich Ataxia condition – well that is me. In my youth, as a junior, I represented Illawarra soccer, was an A-grade tennis player and similarly fortunate to represent NSW in cross-country running.

    Although now in a wheelchair, I have kept myself fit, strong and relatively healthy via the gym five days per week. In addition, I have been able to maintain being ambulatory utilising the treadmill and harness/frame combination. My weight-bearing is also extended to a stand-up hoist at home.

    My sporting competitive nature is still on display with Boccia (similar to bowling, though in a wheelchair). I am also currently working in the Private Health industry for over 25 years. The chronic, degenerative and progressive nature of the condition is a problem but can instil a sense of empowerment and maturity in you, with words such as positive, proactive, structured, flexible, regimented, timely, organised, disciplined, careful, gym-junkie coming to mind.

    My current progression is best described as slow progression. I am hopeful this can be eradicated and reversed!

    My father, Peter Rousch is the founder of fara in its old format, while my sister Emma Hampton is a current board member and part of a great team! I'm proud to be associated with fara Australia.

  • Hi, my name is Kerry Benson and I live in Adelaide, SA. I was born in 1967, and I am married with two adult daughters, and we have five grandchildren. I was diagnosed with Friedreich’s Ataxia (FA) at 31 years of age.

    Those early days of diagnosis were incredibly frightening as I had no idea how quickly things would or wouldn’t progress. There wasn’t Facebook to reach out and get support from other FA Groups.

    I tend to cope by ignoring the FA situation as much as I can. I still work full time and although I was using a walking frame at work, I found I had difficulty keeping up with the pace in the office, so now I use a wheelchair in the office and a mobility scooter outdoors.

    FA is a constant rollercoaster of emotions each time we realise we’re declining a little bit more. It’s ok not to be ok, (just try hard not to unpack your bags and stay depressed) but take the time to accept the change and then move on with new gusto!

    I’m excited to be a fara ambassador because I’d like to help others who are newly diagnosed realise they can still have a very fulfilling and rewarding life. FA changes things physically but enables us to grow in other ways. I’m not the quiet, shy girl anymore. I stand up for myself and others. I live my life with positivity and try to share this outlook with everyone.

  • Hi, my name is Dakota Meikle and I live in Brisbane, Queensland. I’m 25 years old, was diagnosed with Friedreich Ataxia 10 years ago and I live at home with my husband of three years and our three fur-babies.

    I was diagnosed during high school, which was really hard for me, but I have always kept a really tight community of support people around me to lean on.

    When I was diagnosed at 15, I was made to feel that within ten years I would be ‘stuck’ in a wheelchair and would not be able to achieve anything in my life. I am glad to report that over the past ten years I have been busy graduating with my Bachelor of Education, getting married, beginning my Master of Education while working full time as a teacher.

    A big passion of mine is spreading awareness of what life with a disability is really like. Contrary to my 15-year-old self’s belief – using a wheelchair does not feel like being ‘stuck’ in a wheelchair. When I began using a wheelchair a few years ago it was actually a very freeing experience. My wheelchair has given me the opportunity to stay independent and to continue to work, study and do the other things I love. I also enjoy pushing societal norms of the ideas and expectations that are held of people with disabilities; the things we do and the kind of lives we lead.