Author: BernardusMuller

  • I lived a life thats full…

    I lived a life thats full…

    I have a beautiful wife, two beautiful sons, three beautiful dogs, three beautiful cats, live in a beautiful house, drive a beautiful car, so to cut a long story short life is beautiful… So who will be interested in my story? I think many should, while the lifetime risk of being confronted with a serious life threatening disease is much higher than people expect, playing French roulette has less chance on getting the right number.

    Or shall I say Russian roulette?

    Admitted I am a gastronomist, I still am…, drink wine, like good food and honestly in the past I used drugs as well, I lived a life full of temptation, addiction, pleasure and seduction. I sincerely thought that hard work and stress had to be balanced with relaxation in ways businessmen do… at least that´s how I deceived my inner voice.

    We are all victim of a changed world, where the price of a Big Mac is even used as a global inflation index. The evolution of consumption, how I call it, has influenced these little voices inside of us. Do I feel sorry for myself? Absolutely not! One can´t change the past, only the future and I use the power of now, to still plan ahead, dream, believe, create, love and sing Frank Sinatra’s “My way”

    I decided to apply, the passion and drive I do business with, in my disease, as a way of managing it and accepting the challenge that lies ahead, aiming to be as successful as in business.

    I live a life thats full….with love and ALS

    One Man

  • I have a dream…

    I have a dream…

    Many bloggers will write today similar words, exactly 50 years after Dr Martin Luther King said his famous words….. and dreamed of a world with no distinction of race, religion and one being equal.  Today people on our planet are still dreaming, albeit changes in many parts of our modern society.

    I dream of a world with no distinction of disease, equal research efforts and causes discovered. Still the pharmaceutical industry spent most of their astronomical R&D budgets on only a few dozens of diseases where the business models make sense. What they seem to overlook is that, 50 years from now, rare diseases, due to population growth and subsequent genetic mutations, have become altogether the major part of diseases in the world. Where many common ones can be solved by change….what change? Well just our lifestyles…

    Combine this with healthcare systems aimed at symptom management, using lifetime drugs with little efficacy and you will understand that not only patients are sick, but the whole system is. Admitted we have had major jumps in our health system, like the aspirin, polio vaccination, and recently HIV drugs, but why it is now all about risk avoidance, liability limits and exorbitant long development times with over 50% failure?

    I sincerely believe that patients deserve earlier access to experimental medication, but we also need to apply cross functional thinking, like in my industry, when there is an incident, we need to find the root cause. Well, in diseases we should too… Genomics is big today, but we’ve only just started and like with every IT system if you put shit in, you get shit out… Mmmmh, looks like the current modern food chain 😉

    Martin Luther King could not imagine what his words meant for humanity, nor was he able to witness his dream, as sadly many patients won’t either. However Walt Disney said “if you can dream it, it can come true”. Who knows 50 years from now, my blog will be cited for the same words.

    I have a dream…

    One Man.

     

  • Love, hate and other emotions….

    Love, hate and other emotions….

    When confronted with a terminal disease, you will find yourself in an emotional roller coaster, not just the one in an amusement park, but the biggest you have ever been in.

    Your family embraces you with love, whilst you just only want to fight. Your friends feel sorry for you, but their lives continue as well, but don t procrastinate, Nietzsche, Freud, Jung and Tolle have written books full on how people behave, just follow your instinct.

    You might hate the state you are in, your family is angry and questions as why me? appear to one’s mind, but remember we all exist only 0,000002 % of our planet’s evolution time out here, so why the worries and negativity?

    I still travel 150.000 km a year to visit beautiful places, meet interesting people & cultures and I don t postpone till tomorrow what I can do today! I learned on my journeys that not every one on our globe handles emotions similarly, when confronted with an epochal event, hence in our modern world we’ve been imprinted with pre judgements and fear. Just remember the only one that can change that, is YOU!

    Rest assured I’ve been through it all and met many patients in a far worse state than myself, so certainly from time to time allow yourself to have all these emotions, but the next day when you wake up, just look inside and find the strength to continue, stay positive and love the ones, who love you….

    One Man…

  • Extraordinary Measures

    Extraordinary Measures

    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…!

    One Man…..

  • One Man…

    One Man…

    Used to facing challenges in business, I always overcame them, some harder than others, but perseverance is written in my book with a capital P.

    By the way, I am Dutch so excuse my English…

    As a child I wanted to become a journalist, instead I became a successful maritime entrepreneur, probably because it’s in my genes. Maybe writing is too? Hence my first blog.

    Honestly? I have ALS and want to do what everyone wants; change the world and find a cure. I am also a realist and change doesn t come overnight, so its hard work, hard work and repeat that a couple of times.

    I have been diagnosed in June 2010 and my progression is pretty slow, but steadily progressing, the reason I will not write extensive blogs, not sure when I need assistive technology to continue writing.

    But since it is my first one, here is my bio: currently 45 years old and married to my lovely wife Antoinette and two sons 15 & 16 years of age. The oldest one leaving the nest next month to study his A levels in Oxford….oooh his mother is even more nervous than he is!

    My first signs appeared in the winter of 2009/2010 and confronted with a little numbness in my left hand I thought it was time to become more active, after a busy, hectic life where my business grew with Chinese percentages I started working out. Soon it appeared that lifting a weight bar looked like an off-balanced old fashioned scale and after a long journey of exams, I finally got my destiny. Scared, angry, sad but motivated I started my journey with working out even harder, studying and worrying, until last year the real change came, I accepted and took responsibility for the challenge ahead… “heads up, straighten your back and just keep on walking…”

    Since then I have, with my fellow patient, Robbert Jan, lifted up the bar trying to accelerate research efforts by motivating scientists to aim high and thinking that if money was no object…. It resulted in the biggest genetic research study to date, named by me, project MinE.

    Together we founded Treeway, a small biotech company solely aimed at developing therapies for ALS. Since everyone can spent their penny only once, we try to identify promising drug compounds and partner with other companies to shorten the ridiculous development times of drugs in a modern society.

    I use social media to communicate with my audience and how I do this will be in my next blog, first I have to be that man…..

    “One Man can and will find a way, why not be that man”