patients first – independent – combined forces – extending boundaries – optimizing – converting helplessness into strength
They said it couldn’t be done…
In summer 2005 two cycling friends came up with the bizarre idea of cycling up the legendary Alpe d’Huez six times in one day. Not for fun, but for a good cause. Quickly they found a small group of fellow enthusiasts to join them in the challenge. Despite all the scepticism (‘You must be mad’ and ‘You’ll never make it’ were some of the more polite comments made) they carried on training and collecting sponsors. And on 6 June 2006, at 6 minutes past 6 in the morning, it was time to prove the sceptics wrong and start what has since become an international movement. They came, they saw what was ahead of them (exhaustion, heat and cramp, but also friendship) and together they conquered and achieved their goal. All under the motto of ‘Never ever quit!’. By the end of that magical day almost all the cyclists had reached the summit six times. And they had raised close to four hundred thousand euros, every single euro of which went to the cancer charity KWF. Everyone was elated, but back at home they found it difficult to explain exactly what had happened that day. That was when the organisers decided to make it more than just a one-off event. And the rest, as they say, is history. Tens of thousands of people are now involved and tens of millions of euros have been raised.
Two years later the Alpe d’HuZes founders were looking together with KWF (the Dutch Cancer Society) at how best to use the money that had been raised. Their approach was unconventional. The way it was used had to become better, faster and above all, in the patients’ interests. Therefore, the way the money was spent totally changed. Patients, researchers and clinicians on an equal basis, discussed the research that needed to be done. At first most of the money went on seeking to improve patients’ lives, with a unique recovery program being set up. But more needed to be done, also elsewhere in the world. The founders had no idea, for example, what was being done to help children with cancer in India when they were asked. This got them thinking about doing things differently, including the approach towards research. They started talking to leading scientists and reached one
all-important conclusion: things weren’t going fast enough. There needed to be more of a focus in both healthcare and research on the patients rather than just the disease. This marked the start of Inspire2Live: an independent, international patient advocates organization in the fight against cancer.
Inspire2Live faced quite some scepticism. ‘Getting cancer under control? That will take at least another 50 years’. Those sorts of predictions are always safe as no-one will ever call you to account. ‘Why not in 10 years?’ was the question Inspire2Live asked to get scientists on its side and to make them want to combine forces to put the bold plan into action. Just like the 66 mad cyclists setting off up the mountain for the first time, here was another group of people who believed in the goal, irrespective of the consequences, their reputations or what other people thought of the idea. By making better use of existing knowledge, sharing information and generating new energy and fresh ideas they’re seeking to achieve a break-through in cancer research. All with one aim: getting cancer under control. By working together closely to achieve our goal we will overcome the scepticism that can be just as
fatal for an initiative as cancer can for our bodies. All Inspire2Live activities are performed by achievers with ambitious goals and prepared to put in enormous efforts. The patients’ interests are at the heart of whatever they do, and the focus is always on sharing knowledge and information and on being willing to cooperate. No-one is in it for personal gain. Inspire2Live knows that their mission demands endurance. That’s why they’ve adopted the powerful mottos of ‘Never ever quit!’
So far Inspire2Live has now over 40 patient advocates in different countries. All are highly motivated and educated: they know what they are talking about and do their work based on science, knowledge and facts. With their knowledge and experiences in all areas of cancer research and treatments they approach the stakeholders and work with them and ask them to put the patient in the first place: ‘Patients first’. They define the strategy of the topic and then start lobbying the politics, government or industry. When the lobby is not successful; the media and communications will contribute to the realization of the mission of Inspire2Live.
‘Content driven and know what you are talking about, influencing through lobbying and communications for agenda setting and telling the stakeholders and funders what we are doing and accomplishing.’ That’s what will contribute to the mission of getting cancer under control.
We’ve never done it before, so we think we can do it!