Some people will travel to the end of the earth to support a cause, others will run. Two extraordinarily motivated men – John Nicola, Managing Director of Optique Line and Sydney Endocrinologist Dr. Terry Diamond – have done just that, each having completed the most grueling of challenges in their hope to one day live in a world with 20/20 vision.
In an era of increasing competition to gain awareness and raise money for eye care, John Nicola and Dr. Terry Diamond have conquered mammoth personal and physical challenges for the causes they are most passionate about.
In the period of just seven days, John Nicola ran 248km across the Sahara Desert while Dr. Terry Diamond ran seven marathons – in the process covering 294km and visiting seven
of our national icons.
Mr. Nicola ran to raise funds for Optometry Giving Sight. Dr. Diamond was raising funds for research into a cure for Retinis Pigmentosa. Between them they’ve raised almost AUD$100,000 –
and the money keeps flowing in.
Blind people don’t have the opportunity to see these amazing icons, so this run aimed to raise awareness of vision and blindness…
The Toughest Foot Race on Earth
It was in stifling heat that the caravan of the 27th Sultan Marathon Des Sables set off from Morocco on Sunday 8 April for the first leg of a 247km journey across the Sahara Desert. Every year the route is different but every year the competitors – both runners and walkers – battle temperatures that soar into the 40’s, blasting sandstorms and relentless dunes. The multi-national team passages through dry lake beds and remote villages where they observe the lives of desert dwellers, discover green crops growing in the middle of the desert and encounter breathtaking landscapes, on their way to the finishing line in Merzouga, a small town in south eastern Morocco.
As you’d expect, the 850 participants are supported by a massive team of doctors and administrators. However, they must carry their own food, sleeping gear and any other equipment on their backs.
While some competitors race the clock, for most, the objective is simply to get to the finish line.
Impressively John Nicola, Managing Director of Optique Line, completed the gruelling six-day event in the top 35 per cent of the group – in 285th position.
John said he used the event to raise awareness and funds for Optometry Giving Sight. “We strongly believe as a business that it’s important to give back and there’s no better way for us to do this than by helping people in need to gain access to eye care services that we take for granted here in Australia,” he said.
As part of the intensive groundwork leading up to the event, John ran a weekly average of 100km and underwent heat acclimatisation with the Victorian Institute of Sport in a 34-degree heat chamber for 90 to 100 minutes every day for two weeks. However, nothing could prepare him for the experience ahead.
Highway to Hell
Completing the Marathon de Sables has been likened to completing six marathons – in a row. By any athlete’s standard, that’s got to be an extraordinary achievement. Following his first day of competing, Mr. Nicola wrote on Facebook: “This is the most humbling experience. I have spoken with other runners, triathletes and other top athletes who say that they have never experienced anything as tough as this. I managed to get through in one piece – no blisters, just a few abrasions from the backpack.”
The six stages varied in difficulty, with the longest extending for 81.5km of steep climbs, downhill slopes, a river crossing, a valley and relentless sand dunes. To make matters worse, the day concluded under a violent storm, which made the last kilometres even more epic for some competitors.
“As per every race morning, we got started with AC/DC’s Highway to Hell,” wrote Mr. Nicola.
“Let me say, I strictly focused on finishing this day and putting it behind me! It felt like we ran 70 per cent in sand dunes for a total of 81.5 km. It got dark about 7.00pm. We put our head torches on and navigated our way through the desert following the signs and runners ahead with glow sticks. All we could think of was when the next damn checkpoint would appear – (they’re) roughly 12km apart. I was unable to run because of my heavy feet from climbing up and down sand dunes, I eventually got to the finish line just after 1.00am – a gruelling day in just over 16 hours. It was physically trashing, but my mind was clear and liberated from all the pain. I knew my feet were a mess but the others were doing it tougher!”
The race leader completed that stage in just over seven hours – others took over 30.
Blisters, pains in the lumbar region and joints were common occurrences and over the six days, 59 competitors were forced to pull out. To keep as many going as possible, a giant tent was established at the finish line each day where 22 nurses and as many doctors lavished treatments to relieve the many different traumas that presented. At the end of most days, 300 to 400 patients would appear in search of treatment. Those numbers escalated after the 81.5km leg when according to Frédéric Compagnon, the head of the ‘Doc Trotters’ said, “After a long leg, over half the competitors come along to see us. There is a huge amount of treatment of all kinds called for at this time”.
Psychological Support Essential
Dr. Compagnon said an important part of the medical treatment involved psychological support for competitors whose spirits might be a little low: “Our words play a role in the runners’ mental states. When they’re not doing quite so well mentally, we try to re-motivate them so they can head off again the following day with a more positive mindset”, he said.
Another motivation was the flood of emails that the competitors received at the end of every stage of their journey. On the evening of the first leg of the Marathon, nearly 5,000 emails had already made it to the South of Morocco. Five days later, some 40,000 emails had been distributed.
In the emails were children’s words to their heroes, to a mother or father and comforting words from friends and fans – sometimes enough to cause tears to trickle down the cheeks of runners whose emotions were running high as a result of the extreme conditions of the race.
“At a time where everything is instantaneous and virtual, this sheet of paper with the emails is something concrete, like a hand-delivered postcard,” said Adrien, from Darbaroud, the group in charge of printing everything out. “You can hold onto it, reread it, carry it with you in your bag. It’s traditional, like the spirit of the race.”
Mr. Nicola said emails and contact through Facebook were the highlight of his days. “The ‘My Running Odyssey’ Facebook page filled with posts from motivated family and friends awaiting updates,” he said.
The other essential link in the chain is provided by the inspectors who are positioned at each checkpoint and at the finish to check off the competitors’ course cards, note down their respective passage times if the computer fails and distribute water rations. Here again, the psychological aspect is an even more important factor according to competitor François Laratta: “The checkpoint passages are good for the spirits, as you know that you’re covering some ground. Above all though, the inspectors are there to encourage you not to give up. Their delight at being there is a real pleasure to see!”
Having completed this epic adventure, Mr. Nicola said the experience was extraordinary from both a physical and emotional perspective.
“My focus and mental sharpness improved from day to day even though my feet were worse for wear. There were many herculean efforts at this event, none more so than the French bombadiers (firemen) who, on a one wheeled chariot, carried young men with cerebral palsy over every inch of terrain that we covered.
“Let me end by saying that I am humbled by all the support and well wishes I received during the event.”
When asked whether he would compete in the Marathon des Sables again he said, “Well, never say never”.
A Diamond Run for RP
Pnina Kraus was the person who inspired Sydney Endocrinologist Dr. Terry Diamond to run the 294km solo ‘Eye-Con’ run back in March. At 22, Pnina is a fourth year student of Advanced Science at the prestigious University of New South Wales. Nothing too unusual about that – until you take into account that Pnina has just 5 per cent vision – she lives with the untreatable hereditary eye condition, Retinis Pigmentosa (RP).
The daughter of one of Dr. Diamond’s best friends, Pnina chases every opportunity. She has volunteered with youth for three years, she loves art and music and she enjoys travel. Fortunately, the Associate Professor of Endocrinology and Metabolic Bone Disease enjoys travel too.
His run took him to Australian iconic landmarks – beginning with the circumnavigation of the rock at Uluru, and taking in the city beaches in Perth between Fremantle and Cottesloe, Parliament House in Canberra, the Great Ocean Road in Victoria, the beaches of the Gold Coast and his last leg which took him from Manly to Bondi in New South Wales.
Although the Eye-Con Run has fulfilled a “dream of visiting the icons of Australia”, Dr. Diamond said it would never have succeeded without a mission. “Blind people don’t have the opportunity to see these amazing icons, so this run aimed to raise awareness of vision and blindness,” he said.
“It was a massive undertaking, but deliberately so. I wanted to mirror the tough journey and the predicament that sufferers of Retinitis Pigmentosa face every day throughout their lives. Australians are fortunate that the pace of scientific and medical research is rapidly increasing, and that the gift of sight can be restored to many with vision impairments. For sufferers of Retinitis Pigmentosa, however, their loss of sight is presently permanent and untreatable,” he said.
“The reality of living with Retinitis Pigmentosa is that those suffering the disease must cope with everyday life while seeing their world slowly disappear. Such people face the extraordinary task of living with permanent vision impairment while trying to work towards and succeed at their goals.”
Dr. Diamond trained for several months ahead of the marathon, running twice a day, six days a week. He built up the kilometres to the point where he’d be up at 4am to run 15 to 20km before heading off to work, then he’d do it again in the evening.
“There were stages when I couldn’t see any finish line ahead during training, but I’d close my eyes as I went along and run as if I was blind – and that would remind my of what I was doing it all for.”
All the Best Plans
Even with all the best plans in place, a close-knit support team and having undertaken extensive training, Dr. Diamond encountered challenges along the way – aside, of course, from the rigour of completing each day’s run.
On the evening before the first leg of the journey, which was to take him around the rock at Uluru, a member of Dr. Diamond’s support team received a call.
“The ranger heard about our marathon activities and said that we were not allowed to enter the Kata Tjuta National Park, since the Elders were not in favour of Uluru being used for promotional activities. Our hearts sank and we were starting to look at alternative plans when he called back to say that he would meet with us to discuss another option.
“Needless to say, he was extremely pleasant and understood our cause. Since I was running alone and not in a group, he gave us his blessings.”
In the Barossa Valley, Dr. Diamond suffered the impact of a late night ahead of the run. “It was after 9pm when we finally arrived… It had been a long day… I was exhausted and frantic to get to sleep. We were fortunate to have lunch on the flight but there was no time for dinner. So a piece of toast with avocado had to suffice.
“This was a disastrous preparation for the next day’s marathon. I started with a faint pain in my left calf. The terrain started to unfold… My calf and thigh muscles soon started working overtime as I tackled the hills, each spanning from 50 to 200m. I was also heading into a strong headwind (20-30 km/hr) that had come up overnight. More trouble… by 12km I was starting to fatigue…”
It was a tough leg of the journey but once he was in Victoria, things turned around. At Bells Beach Dr. Diamond was joined by his son and a nephew who lightened the load and reminded him of just how fortunate his life is.
“I was very fortunate to have one of my light hearted, funny, joking and caring sons who kept shouting to passersby ‘this
man is running for charity, cheer him along, he is my dad and my hero’. I thought how fortunate I am to have such a wonderful family.”
And then in Canberra, having run through horrendous traffic, he achieved high level recognition for his cause
and his efforts.
“My heart started pounding with emotion as we arrived at Parliament House where I had the privilege of meeting Kate Lundy, Minister of Sports and Recreation and Jan McLucas, Secretary for Disabilities… They made a short speech, recorded a YouTube clip and thanked me for my efforts and raising awareness of RP.”
A crowd of well-wishers welcomed Dr. Diamond onto Bondi Beach at the conclusion of his marathon on 25 March. Among them was Pnina Kraus who had completed a journey of her own during that same seven-day period.
“As the ‘face’ of the Eye Con Run, Pnina was just amazing, all saw her beauty, bubbling personality and courage,” said Dr. Diamond.
Indeed, Pnina’s face and her story were splashed across the media with items on Prime News on Channel 10, ABC, and the Sun Herald as well as radio exposure on 2GB and Radio Australia.
“The journey I experienced… was of a similar nature to Dr. Terry Diamond’s,” said Ms. Kraus. “Although I did not push the physical boundaries of my body, I met emotional barriers. Speaking to various audiences was not the easiest task. Although I seemed calm and collected, as I spoke I felt a rush of overwhelming emotions. What got me through was the realisation that I was surrounded by love and support from my family and friends. I knew that the Eye-Con Run was not about me, but rather every individual with RP worldwide. This gave me the courage to persevere and try my best to bring us one step closer to a cure. As Dr. Terry has shown us, one man can have a worldly impact.”
Furthering Stem Cell research
Dr. Diamond said funds raised from the Eye Con Run would be directed to Professor Greg Dusting at the University of Melbourne who carries out stem cell projects at CERA. “The future – our dream to restore sight to 20/20 to individuals with Retinis Pigmentosa by 2020 must become a reality. We must strive and push ahead with our mission,” he said.
Dr. Diamond said he would work with the University of Melbourne to encourage a stem cell program over the next three years. “All I ask is that everyone continues to back our dream and encourage industry and those in a strong financial position to help our cause.”
The Competitive Nature of Fundraising
According to the Australian Bureau of Statistics, there are over 51,000 ‘tax concessional charities’ in Australia. That’s one charity for every 437 people in the country, which makes it a hard task to raise funds, particularly in a stretched economy.
While most of the charities mivision spoke to said that funds are rolling in despite the current economy, reports from 2008-09 identify that the amount of money donated to charities dropped by AUD$253m. Andrew Thomas, the general manager of the Philanthropy at Perpetual, said that was despite an increase in the number of Australians giving – over a third of the donations made in that period came from just 52,000 individuals.
A Holistic Approach is Vital
Ms. McKay said attracting funds from donors requires innovative thinking and an investment of time and money. “There is a limited amount of money that we’re all competing for. To be successful as a not for profit you have to have a holistic program – a strategy that encompasses the whole gambit of raising income, and awareness and delivering results. You have to be highly professional in your marketing… you’ve got to pay money to make money.”
The Social Media Angle
Social media is increasingly being used by not for profits and fundraisers to both raise awareness of causes and collect donations.
Both Dr. Diamond and Mr. Nicola actively used Facebook to write up each leg of their extraordinary adventures. In doing so, they engaged their supporters and encouraged them to ‘spread the word’. Mr. Nicola used Optometry Giving Site’s website to collect funds while Dr. Diamond used rapidly growing site for individual fundraisers fittingly called www.everydayhero.com.au.
According to philanthropy experts, the introduction of online fundraising tools to facilitate fundraising for events has resulted in a significant increase of mates supporting mates with donations. And it makes sense – there’s no doubt that the ability to create awareness among friends, family and colleagues with an email that links to an online donation facility is a powerful fund raising tool. Particularly when the fundraiser receives immediate feedback on who has donated to their cause and how much they’ve given!How You Can Still Donate
Donations in support of John Nicola’s Sahara Desert run can be made by visiting Optometry Giving Sight on www.givingsight.org Click on DONATE. You will see the link to ‘John Nicola – Marathon des Sables’ under Team Fundraising. Click through to ‘Sponsor Me’.
Donations in support of Dr. Diamond’s marathon effort for Retinis Pigmentosa can be made by visiting