Walking a million meters, running marathons, cycling 2,500 miles, swimming across the Channel, jumping out of airplanes, climbing mountains—just a few of the extreme challenges people undertake to raise awareness and funds for various diseases.
Words alone cannot accurately describe the courage, strength, and exceptional effort these generous and caring people exhibit when they commit to achieving such ambitious goals for a worthy cause. Patients often take part as well; I myself have swum, cycled, and walked my way through various events in order to raise funds for ALS/MND.
Many patients wish they could participate in these challenges, but simply can’t because of their condition. Oftentimes, their relatives and friends participate in their place. Rare diseases like ALS/MND fully depend on these crowd funding efforts to facilitate necessary research and care, and to spread awareness, as most government and pharmaceutical research funds go towards more big ticket, high-profile diseases.
In the past weeks I have followed many events online and estimate that several hundreds of fundraising activities are initiated around the globe for my condition, and several thousands more for other rare diseases. As a results-driven entrepreneur, I always like to think about how we can do better? Because we always need to strive for something bigger, I was inspired by the words of a man recently diagnosed who said, “I would like to raise a billion dollars, a billion for Bob!” Well that’s certainly raising the bar high!
Patients working together for the benefit of other patients has certainly been successful before; think of the huge amount of awareness and funds that have been raised in support of HIV. But can money buy everything? Suppose we were to have $1 billion—where would we start? Who would decide how it was spent? Nowadays patients are well informed and can judge for themselves whether certain expenditures make sense or not, but not many are involved in these decision making processes…something I do think should change.
The Dutch are straightforward people and as such, I like to put my money where my mouth is. That’s why I initiated project MinE. We have to start with unraveling the mystery of our disease. When you want to kill a weed, you have to pull it out by the roots or it’s bound to come back! The scope of Project MinE is bigger and more ambitious than all of the current research funds being spent on ALS/MND worldwide, crowdfunded, open access, so everyone can be involved in Project MinE.
I hope soon to initiate a larger effort to combine our forces, a “One Man” campaign, by patients and for patients, assisted by all these amazing men and women around the globe doing extraordinary things in order to achieve our common goal.
Meanwhile, keep on running, swimming, walking, cycling, hiking, cooking, jumping, climbing, canoeing, racing, skydiving and…achieving!
MinE, Make it yours!