The use of social media can be tremendous, both attracting and informing people out there. Specifically ones confronted with a rare or chronic disease can use them to raise awareness on their condition, but hey…. it’s BIG data out there!
Only tweeting about your condition or advocating a certain disease will help, but rare diseases aren’t sexy or trendy….
The best example given is the hollywood movie “Extraordinary Measures” with Harrison Ford, about a father on the quest to save his children from Pompe’s disease and raises a 100 million dollars, adapted by the book “The Cure” from Pulitzer price winner, Geeta Anand. Cinema’s remained empty and it went off screen in just four weeks, making it a big box office disappointment.
But lets face it…., who wants to be confronted with lethal diseases that only occur in small groups of people, certainly not the general public. In most western countries we are cognitive dissonant and ignore until it happens and in the eastern culture one accept life as is.
How change all this? Firstly you have to define a strategy and set goals. Ask yourself a simple question : What do you want to achieve? Be specific in answering and define this in only one sentence. Most probably you will answer “I want to find a cure for …….” But can you? Make some time for reflection and think twice. Then set goals, make them very specific & measurable, aim high but be realistic. Do lookup the strategy of your association and be critical if they meet yours…
Secondly you execute, remember ideas are only 1% of the work, the rest is blood, sweat and tears.
Thirdly you evaluate and see if your strategy is working and you’re on your way to reach the goals, don t worry if you cant see it immediately, be patient but not relax in your sofa for long, adjust when necessary and execute again. It s a learning curve, trial and error, like with most drug developers unfortunately.
I mix both cultures in my strategy and do whatever is necessary to find the cure for ALS, but to make a disease sexy and trendy we have to reinvent the wheel from time to time.
Let’s hope the movie “You’re not you…” With Hilary Swank and all about ALS will be more successful when released this year. As a community we can help promoting it by acting, not in the movie but outside, maybe we all use the hashtag #urnotu and at least become trending on twitter. It has only been used once in the past, one tweet can change the world, like the butterfly in the Amazon that changes global weather.
Just believe and it will happen, but only with extraordinary measures…!