If you are an FA patient we invite you to participate in the FA Global Patient Registry. This way you will be informed about opportunities to participate in clinical research studies and kept up-to-date on the progress of clinical trials.
Below are just a few of our inspiring FA ambassadors. Read their stories to find out how they have dealt with FA and managed to live full, fantastic lives.
MEET LEAH ALSTIN
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 of 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!
MEET TERRY O'HANLON
My name is Terry O’Hanlon. I’m over 50 and I have two grown boys (over 21). I retired in 2010 after a 25-year career in advertising, the last 10 years in Melbourne. We moved north and now live happily in Cleveland QLD.
My eldest brother (10 years older than I) also has FA. He was diagnosed in 1994 after a long, arduous process (the FA gene was identified in 1996). Things were a little more straightforward for me – my wife noticed my unsteadiness and said “I think you’ve got what your brother has” and although it took a number of years, a few meetings with doctors and a DNA test confirmed my diagnosis.
But, like many people with FA I suspect, I thought I could hide it. If I was careful, no-one would notice. I probably fooled nobody and certainly made my own life more difficult. When I was trying to pretend I didn’t have FA there were many things I couldn’t do or wouldn’t even try.
The DNA test confirming my diagnosis was in 2003, and since then I’ve accepted my FA and learnt as much about it as I could. Now I’ve accepted my situation I can do pretty much anything… in my own way and at my own pace. The reality is not as bleak as it’s often painted. Yes, FA is progressive and degenerative but it’s been conclusively proven that a healthy lifestyle and regular exercise can slow down that progression. I do the regular exercise bit. I’m not trying to have the perfect life. I want a happy life. And accepting things I can’t change is a good starting point.
MEET SAMANTHA DWYER
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 has allowed me to go to university and start fulfilling my dreams of travelling overseas! After graduating, I worked in my parent’s travel agency where I found my true passion of social media marketing. I have since started my own business of social media marketing and I love being my own boss. I love the gym, taking my dog for walks and I have recently taken up horse riding. I have joined the board of the Friedreich Ataxia Network which is based in Brisbane. The future is still scary for me but I am so proud and excited to be a fara ambassador as I think the things we can achieve together are endless.
MEET NICK HEPPER
My name is Nick Hepper and I live in Adelaide, South Australia. I am 28 years old and I created a fundraising campaign called Riding for Ataxia. I was diagnosed with FA at the age of 21.
I was very active at the time training to become an outdoor instructor. I was bush walking, kayaking and specialising in rock climbing when I noticed my balance would worsen when I was exhausted from these activities. I was told upon diagnosis to give up this career and find another career which FA could be a part of. I worked in the outdoor industry for a number of years after my diagnosis and I tried as hard as I could to block out FA in those early years.
As my balance worsened I had to give up the outdoor work and switch to outdoor retail. At age 25 I decided that I was going to use the physical ability I have to achieve something that I could be proud of and simultaneously help the FA community.I have decided to ride from Adelaide to Melbourne for FA research. I’ll be departing Adelaide on 28th September and riding into Melbourne on 27th October. I am so proud to be an FA ambassador. I am very positive about FA’s future and I think we have some very exciting times ahead!
MEET NICK ROUSCH
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. If you are unable to weight-bear the gym has a broad range of devices you can utilise – including stretching.
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 arena, soon to be 25 years in early 2018, albeit part-time.
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 and depicted as a step-wise 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 Director and part of a great team!
I'm proud to be associated with fara australia.
MEET ASHLEE DOLBY
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.
MEET KERRY BENSON
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 fulltime 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.
MEET TROY LESLIE
My name is Troy, I was born in 2000 and I live in Perth. My symptoms started to show from age 10 when I would lose my balance a lot. I was diagnosed with FA on my 12th birthday. I use a walker sometimes but predominantly I use a wheelchair. (Like others with FA, I’ve had many falls over the years some of which have resulted in broken bones).
In school I would always participate in sports activity. I especially enjoyed rugby even when it became a challenge to stay focussed on the game. I have always loved swimming and still swim today.
I was never good at athletics but enjoyed every moment of it. At 16 I played wheelchair basketball for a while and I loved that because I was competing with others like me. I’ve always tried my hardest in everything especially physical activity, even if sometimes I found it hard. The fatigue from FA hasn’t helped.
I finished school in 2018 and have my certificates for Graphics and IT. Not long after school ended my family and I drove our bus from Perth to Melbourne for the inaugural RideATAXIA where I got to meet many other FAers including Kyle Bryant and Sean Baumstark which was the highlight of our trip and one I’ll never forget.
These days I stay active in other ways. I recently had surgery on my spine to correct scoliosis, a symptom of FA. I needed to stay in hospital for 10 days. So, for general recovery and to help build muscles back in my legs I go to the gym regularly. Going to the gym has been one of the best decisions I have ever made! I also enjoy hydrotherapy and I see a physiotherapist who helps me with things I’ve never thought of.
I look forward to being a fara Ambassador and am excited about this opportunity.
MEET CAITLIN MAYNARD
My name is Caitlin Maynard, and I live in Sydney, NSW. I was born un Somerset, England in 1995, and have lived all over the world since then. 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 firs 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 was also having a hard time at school, which we now know is because of FA I was having difficulties writing and taking notes so I didn’t have much to study from.
A year later my dad’s job was moved to New Delhi, India! We lived there for the remainder of my time at high school, and noticed my symptoms getting worse. We decided not to do all the genetic testing until I had graduated high school and moved back to the US. That is the story of how I simultaneously learned about FA and learned how to cope with my diagnosis. I am now living in Sydney with my wonderful parents, my great partner, my sweet cat Magnolia, and my new Aussie pup Mr.Bojangles!