Australia: Biking to raise funds for research

 

Picture this: A once-in-a-lifetime, 700 kilometre bicycle ride across the magical landscapes of Australia – A personal challenge that may be one of the most memorable you will ever undertake – Raising funds for research into rare and very rare eye conditions – And making friends for life… all this, at the same time. Pie in the sky? No. Over forty people have just proven the contrary, thanks to Fighting Blindness, a research charity based in Ireland.

 

Fighting Blindness funds world-leading research into cures and treatments for blindness. It also provides a unique professional counselling service for people with visual impairments and their families, as well as for people affected by other genetic conditions. ‘In 2000, Fighting Blindness operated with only three staff and had six research projects, but no government funding,’ says Avril Daly, EURORDIS Board Member and Head of Public Affairs at Fighting Blindness. ‘We therefore had to be creative and find different methods of funding, including how to involve patients themselves in the financing of our research projects. This is how the idea of treks and active events came to be.’

 Whizzards of Oz logo

The concept is strikingly simple. Participants in the October 2009 bike ride across South East Australia were asked to raise a minimum of €6,200 each to fund their challenge and provide funds for Fighting Blindness. At registration, the organisation provided them with a fundraising pack, useful advice, and the support they needed to reach their sponsorship target. After that, everything was included, from the return flight to Australia, transfers, food, accommodation, to local guides and support and medical staff. People who took part in the 2009 Australia challenge came from all walks of life, patients and their families, the general public, young and old, experienced bikers or not. Most people with a visual impairment rode a tandem with a pilot cyclist. The itinerary had been carefully chosen for its uniqueness; it started with the Great Ocean Road, one of Australia's great scenic coastline drives; the ride also included several national parks and typical Australian townships, and to top it all, the Melbourne Cycling Festival Ride with no less than 16,000 participants! Of course, a trip “Down Under” could not finish without saying “G’day” to multicultural Sydney and its breathtaking bay and surroundings.

 

Nora O’Sullivan had already participated in similar events in China, South Africa, and Argentina, but she was very much looking forward to the Austr2 cyclistsalian trip. ‘Completing a personal challenge is amazing of course,’ she states, ‘but the interaction with the visually impaired is a real highlight. It helps you to realise that disability is not the issue; it’s rather the ability to cope with life challenges! Meeting people and their cultures, and the great welcome one receives is also fantastic.’ John Lynkey, who suffers from Retinitis pigmentosa was also riding his bike. ‘I'm still independent enough to make my way around and take care of myself,’ he says. ‘That said, it is very helpful to have people around to help me when I go to places that I'm not familiar with.’

 

‘Fighting Blindness organises three active events per year,’ explains Avril Daly. ‘A trek to Everest for the fittest and the most daring, one in Europe for a shorter period and of a less challenging nature, and a third one in an exotic location such as Tanzania, Vietnam or New Zealand. Our events are always based on individual challenges, which are not for the faint-hearted: participants can walk up to five or six hours per day, or ride 100 kilometres. Definitely not your classic travel agent tour!’

 

‘More than 1,000 people have been involved in our active events so far,’ continues Avril Daly. ‘It has helped us achieve several important goals: promoting the work of Fighting Blindness at local level, increasinWhizzards of Oz groupg awareness of vision impaired patients and of their rare conditions, and, of course, raising funds for research. Many participants later continue to engage with our organisation. What better way of building a support network? Of course, there are hurdles along the way. Each initiative takes nearly a year in the making, they have to be marketed carefully, ground handlers must be selected with care, and everything has to be put in place to ensure personal safety. There is also the occasional negative publicity by people who perceive our trips as an all-expenses-paid holiday, rather than understanding that it is a personal challenge, a cultural experience, an education about rare eye conditions, and a great way to help Fighting Blindness fund research for patients. ‘In Ireland,’ concludes Avril Daly, ‘much medical research is funded by patients and charity groups who have learned to apply for funding for their projects and to be innovative in their financing.’

 

It is too late for the Australian bike ride, but Fighting Blindness has already planned a trek in Transylvania and another in Peru for 2010. Why not take on the challenge? You won’t regret it. Or you may want to bite the bullet and organise similar challenges for funding research into specific conditions in your own country…

 

Read more:

Whizzards of Oz Australia Cycling Challenge and Itinerary

Fighting Blindness Active Events

 

Author: Jérôme Parisse-Brassens
Photo credits: © AllTrails & Fighting Blindness

 

 

 

Page created: 15/12/2009
Page last updated: 06/08/2013
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases