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 am 34, and married with two beautiful children aged 5 and 7. I was diagnosed with Friedreich’s Ataxia (FA) 17 years ago 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 52, I’m married and we have two boys (aged 21 and 19). 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 more straightforward for me – my wife noticed my unsteadiness and said “I think you’ve got what your brother has” and within a few meetings with doctors it was confirmed.
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.
I had a DNA test confirming my diagnosis in 2003, 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 for that.
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 27 years old and I created a campaign called Walking for Ataxia in 2016. 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 walk the Heysen Trail which is a 1200-kilometre trail that runs through South Australia while raising money for FA research. I am so proud to be a FA ambassador and I can’t wait to get started. 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 reside in Wollongong N.S.W. 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 N.S.W 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! The new website (fara.org.au) serves as a great platform to depict numerous upcoming funding events, research updates, fellow F.A Ambassadors, blogs and even an F.A shop. Upcoming major events include;
· LUSM campaign (now internationally recognised!)
· RideATAXIA Australia
I'm proud to be associated with fara australia. See you at the Gala on April 27 2018!