Cairns Ironman raising funds for Stargardt disease
Donation protected
Tim's story...
It was 1996. I was doing exactly what I wanted to be doing. I was training full-time to become a professional triathlete. My goal was a podium place in the Ironman World Championship at Hawaii. Everything was going to plan. I was winning races and my race times were competitive. However, something odd was beginning to happen to my vision. I started to trip on gutters and raised edges when running and riding directly into objects on the road without any attempt to avoid them. Such instances became increasingly frequent and dangerous.
Having no known family history of any significant eye conditions, I sought medical advice from an ophthalmologist. Following clinical testing, I learned I was experiencing early symptoms of Stargardt disease. I was then informed my central vision in both eyes would progressively deteriorate to the extent I would probably become legally blind. Consequently, I stopped competing in triathlon immediately and, on advice from the ophthalmologist, pursued a legal career instead. In fact, I can recall his actual words - “Tim, go get yourself a good education and you’ll always have a good job”. For me, having learned my career as a professional triathlete had just ended, hearing those words when I was most vulnerable instantly exposed me to a range of new opportunities. As a result, the next decade of my life was mostly dedicated to academia. Indeed, I applied the same level of rigor and discipline to studying business and law that I did to training. I would say though, being a triathlete was more fun than being a lawyer.
Twenty-five years’ later, yes, now legally blind, and no longer able to be a professional triathlete, I can use Ironman for a more meaningful purpose. That is, to raise public awareness about juvenile or early onset macular degeneration in children and raise funding to try to accelerate further medical research into the discovery of effective new treatments, including the mutation of the ABCA4 gene - the leading genetic cause of Stargardt disease.
For me, there has never been a more important goal. You see, my son whose 10 years’, has recently been diagnosed to have inherited Stargardt disease too. As I did 25 years’ ago, he has abandoned his career goal of being a professional tennis player due to progressive loss of central vison in both eyes.
To support me on this journey, I have joined with Collective Leisure who works with people with disability to be well-beings and fulfil their greatest potential. David Burns, the founder of Collective Leisure, is a seasoned Ironman competitor himself. Having completed 5 Ironman events, David is well placed to be my trusted guide and pilot. Over the next 9 months, much of our training will be done together helping us to learn from each other along the way. On 12 June 2022, when we line up on the start line at the Cairn Ironman, we will be tethered together throughout the 3.8km swim, ride on a tandem bicycle for 180km, and then tethered again for the 42kim run. While we are not focused on any particular finish time, we would like to complete the course in around 13½ - 14 hours – hopefully before pubs close.
At this stage, I feel I am ready, willing and able to successfully tackle an Ironman. Indeed, I can apply many of the strengths gained through having lived experience with disability, for example, agility and resilience. However, I suspect a lot can happen to the body over 9 months of intense physical training after a 25 year hiatus from the sport.
According to the Foundation Fighting Blindness, Stargardt disease is often diagnosed in childhood or adolescence. It is generally an inherited form of macular degeneration causing central vision loss. The condition is sometimes referred to as juvenile or early onset macular degeneration. Stargardt disease affects 1 in 10,000 people world-wide. While it is generally considered to be a rare disease, to my mind, that is a lot of lost dreams in children.
COVID-19 has demonstrated to us how medical science can be accelerated to discover effective new treatments to address complex medical conditions. Bringing the necessary research capacity and capabilities together through institutional collaboration requires financial resources. And. as COVID-19 has shown, when the right research teams are supported through an appropriate level of funding remarkable things happen.
All monies raised will be donated to the Children’s Medical Research Institute in order to support them in their research into the discovery of treatments for genetic retinal dystrophies, and in turn, enable kids living with genetic retinal disease to fulfil their life goals.
Thank you
Timothy Green and David Burns
It was 1996. I was doing exactly what I wanted to be doing. I was training full-time to become a professional triathlete. My goal was a podium place in the Ironman World Championship at Hawaii. Everything was going to plan. I was winning races and my race times were competitive. However, something odd was beginning to happen to my vision. I started to trip on gutters and raised edges when running and riding directly into objects on the road without any attempt to avoid them. Such instances became increasingly frequent and dangerous.
Having no known family history of any significant eye conditions, I sought medical advice from an ophthalmologist. Following clinical testing, I learned I was experiencing early symptoms of Stargardt disease. I was then informed my central vision in both eyes would progressively deteriorate to the extent I would probably become legally blind. Consequently, I stopped competing in triathlon immediately and, on advice from the ophthalmologist, pursued a legal career instead. In fact, I can recall his actual words - “Tim, go get yourself a good education and you’ll always have a good job”. For me, having learned my career as a professional triathlete had just ended, hearing those words when I was most vulnerable instantly exposed me to a range of new opportunities. As a result, the next decade of my life was mostly dedicated to academia. Indeed, I applied the same level of rigor and discipline to studying business and law that I did to training. I would say though, being a triathlete was more fun than being a lawyer.
Twenty-five years’ later, yes, now legally blind, and no longer able to be a professional triathlete, I can use Ironman for a more meaningful purpose. That is, to raise public awareness about juvenile or early onset macular degeneration in children and raise funding to try to accelerate further medical research into the discovery of effective new treatments, including the mutation of the ABCA4 gene - the leading genetic cause of Stargardt disease.
For me, there has never been a more important goal. You see, my son whose 10 years’, has recently been diagnosed to have inherited Stargardt disease too. As I did 25 years’ ago, he has abandoned his career goal of being a professional tennis player due to progressive loss of central vison in both eyes.
To support me on this journey, I have joined with Collective Leisure who works with people with disability to be well-beings and fulfil their greatest potential. David Burns, the founder of Collective Leisure, is a seasoned Ironman competitor himself. Having completed 5 Ironman events, David is well placed to be my trusted guide and pilot. Over the next 9 months, much of our training will be done together helping us to learn from each other along the way. On 12 June 2022, when we line up on the start line at the Cairn Ironman, we will be tethered together throughout the 3.8km swim, ride on a tandem bicycle for 180km, and then tethered again for the 42kim run. While we are not focused on any particular finish time, we would like to complete the course in around 13½ - 14 hours – hopefully before pubs close.
At this stage, I feel I am ready, willing and able to successfully tackle an Ironman. Indeed, I can apply many of the strengths gained through having lived experience with disability, for example, agility and resilience. However, I suspect a lot can happen to the body over 9 months of intense physical training after a 25 year hiatus from the sport.
According to the Foundation Fighting Blindness, Stargardt disease is often diagnosed in childhood or adolescence. It is generally an inherited form of macular degeneration causing central vision loss. The condition is sometimes referred to as juvenile or early onset macular degeneration. Stargardt disease affects 1 in 10,000 people world-wide. While it is generally considered to be a rare disease, to my mind, that is a lot of lost dreams in children.
COVID-19 has demonstrated to us how medical science can be accelerated to discover effective new treatments to address complex medical conditions. Bringing the necessary research capacity and capabilities together through institutional collaboration requires financial resources. And. as COVID-19 has shown, when the right research teams are supported through an appropriate level of funding remarkable things happen.
All monies raised will be donated to the Children’s Medical Research Institute in order to support them in their research into the discovery of treatments for genetic retinal dystrophies, and in turn, enable kids living with genetic retinal disease to fulfil their life goals.
Thank you
Timothy Green and David Burns
Fundraising team (2)
David Burns
Organizer
Paddington, NSW
Timothy Green
Team member