Tag: Amyotrophic Lateral Sclerosis

  • Future evolution

    Future evolution

    Following the news feeds of blogs and various websites in the healthcare and biotech industries provides you with insights about where we are heading in the future. In my blog post “So far, so good,” I wrote about the autoimmune illness that’s plaguing the world healthcare system. Today I’d like to take you with me on a journey into the future.

    It does’ t require a visionary perspective to come to the conclusion that the growing prevalence of cancer, obesity, diabetes, and numerous neurological disorders is a bit of a modern phenomenon in the timeline of human history.

    Whereas the very existence of mankind was once threatened with extinction by different viruses or bacteria in ancient times, then called plagues, nowadays we think we’re far too smart to be taken down by a few nasty microbes. However, when confronted by the widespread panic that occurs when certain viruses mutate, a looming antibiotics crisis, and the frightening fact that over 5% of the US population is infected with untreatable super bacteria, you suddenly have the impression that we’re all playing some real-life, global version of Plague Inc., a popular game where the primary goal is to wipe out the world’s population with viruses and bacteria.

    Many scientists blame the drastic changes in our environment for our modern  super diseases and to a certain extent, I agree. As a human race, we’ve survived an industrial revolution, an information revolution, and are now in the middle of a biotech revolution. We genetically modify our food to boost production, adding chemicals for sustained quality and improved shelf life without even knowing the long-term effects. No worries, I am not a strong advocate of everyone going organic. We simply can’t produce enough food in this manner to feed the world’s population. It is very noble to think we can, but lets’ be honest, we first have to reinvent the food chain and then we’ll all have to start eating algae.

    The field of genetics is also evolving. We now know that our imprinted DNA is not necessarily what is biologically expressed in our bodies. Cells can have different DNA profiles and even tiny environmental changes can influence how these genes express themselves, resulting in unknown, complex, and rare diseases. With new technologies like proteomics, transcriptomics, and metabolomics, we are trying to find out what exact biological path a disease will follow. In the meantime, we still need to unravel the causes of many of these same diseases.

    The real question is if technology can keep up with the human race. With a world population of over 7 billion, an annual birth rate of over 130 million, and an average of around 100 de novo variants per person, that’s roughly 13 billion new human genetic mutations formed on an annual basis! That’s what Darwin called evolution…

    I am a passionate advocate for science and technology. Sadly, the scientific community is restricted and hampered by increasingly strict privacy legislation, ethical concerns, and a pervasive reluctance to change. We have the World Health Organization, but their task is primarily reactive. We don’t have a UN of science. In its place, there is a lack of coordination and collaboration. Only in despair and in cases of extreme crisis do we join forces. Then it’s usually already too late…

    As there are around 100 trillion cells in the human body, with each encoding 3 billion base pairs of DNA, it ‘s almost as if we’re like the ancient Greeks, discovering the stars and the universe, which after more than 2,000 years still remain a mystery. It might take decades, if not centuries to unravel the biological mysteries within our own bodies. And where Galileo ended up literally blinded by science, I surely hope we don’t.

    I am not trying to sketch a gloom and doom scenario. We know that nature has a tendency to balance itself. That’s one of the basic lessons that emerges from studying evolution. Luckily some governments, like the UK, are seeing the importance of life science technology and announcing large-scale genetic projects. Unfortunately, these initiatives are still a drop in the ocean of human biology and without lifting the restrictive rules surrounding it, we still have a very long way to go. A recent FDA ban on the genetic company 23andme, a pioneer in consumer genetics, offering their services at low costs to interested consumers, proves this point. I believe 23andme and the services they provide are a good step forward, but still not the giant leap that we desperately need. Certainly not now that the FDA ban takes us several steps backwards instead.

    Historically we have had major scientific breakthroughs that have reshaped our thoughts, cured diseases, and even taken us to the moon. Why can’t we experience another one tomorrow? I know that I’m not alone in my opinion, but we are unfortunately too outnumbered to convince the politicians and world leaders who set the scene for the majority of people. In my opinion, this is far more important than the issue of climate change, which after many years has been prioritized on everyone’s agenda.

    Keep the faith and stay hopeful. It’s never too late to change… our future evolution.

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  • Simply words…

    Simply words…

    Tag Cloud One Man
    Tag Cloud One Man

    When you are fighting a disease one is often motivated and inspired by quotes or words of admired leaders.

    All these One Man´s inspired thousands and thousands of people, changing existing paradigms and consequently changed the world.

    A tag cloud of almost 70.000 most used words from 20 speeches resulted in the beside standing image.

    Surprised? I wasn´t… The spoken word is the most distinguished gift that Nature gave to us and powerful words haven’t really evolved in time, as you can see. I used speeches from various people in history, from Socrates to Steve Jobs and from Jesus Christ to the one that gave name to my disease, Lou Gehrig.

    They use mostly simple words in their speeches in their fight against racism, apartheid, terrorism, crime or their hope for freedom, achievement, ending poverty and curing diseases.

    In my image the only difficult word, “Umkhonto”, came from Mandela’s speech “I am prepared to die” from 1961, which means spear and refers to the armed wing of the ANC, we all know how the story ends and how it changed history.

    So not intellectual words, complex verbs or scientific equations, but words that everyone understand are the way to change. It emphasises one’s belief that you can change the world and it might not even be so difficult, not by shouting it of roofs, but by inspiring others with simple words.

    One Man

    For the ones inspired and interested in the speeches I used, here’s my list:

    • The Fall of the Berlin Wall – Ronald Reagan
    • Going to the Moon – John F Kennedy
    • The Vast Wasteland – Newton Minow
    • The Most Successful Drop Out – Bill Gates
    • Don’t loose faith – Steve Jobs
    • The Mountaintop – Martin Luther King
    • Against Imperialism – Che Guevara
    • The Gettysburg address – Abraham Lincoln
    • Farewell to Baseball Address – Lou Gehrig
    • Depart! – Alexander the Great
    • Apology – Socrates
    • Wonders of science – Albert Einstein                                      
    • I am prepared to die – Nelson Mandela
    • Blessed are the poor in the spirit– Jesus Christ
    • The sun shall never set on so glorious a human achievement’ – Nelson Mandela
    • I have faith in the righteousness of our cause – Mahatma Ghandi
    • Give Me Liberty or Give Me Death – Patrick Henry
    • We are not only scientists, we are men too – J Robert Oppenheimer
    • Freedom of Choice is a universal principle – Mikhail Gorbachev
    • Time Has Come for Universal Health Care – Barack Obama
  • So far… but so good!

    So far… but so good!

    One of the conclusions that came out of a report on the financial crisis was the complexity and lack of transparency that led to the ultimate meltdown of a system that was put in place over 40 years ago. Forced by public opinion, the excessive bonus culture of the financial industry came under intense scrutiny and the banking world was forced to reinvent itself, ultimately returning to a more sensible definition of home base.

    Many high-profile economists agree that our medical and health care system is about to collapse, hence prompting the Harvard Business Review to open @Hbrhealth and inspiring countless blogs with just as many opinions. Can we really fix the health care system from a business angle, like a failing bank, or might there be a different approach?

    Healthcare systems differ per country, but basically the concept is the same. Workers pay taxes and/or insurance premiums, while insurance companies and national health institutions provide the insured with care, medication, and more. From an economic point of view, the two sides of this equation should balance out. So far, so good…

    Let’s move on to pharmaceutical companies, many of whom made billions with blockbuster drugs which they invented in the sixties and seventies when development costs were mere peanuts compared to now. Some scandals at that time forced them to cooperate with government agencies to ensure that safety comes first in clinical trials. This has evolved into one of the most complex governance models there is on the globe. These companies now spend a lot of their earnings in research and development on trying to develop drugs for lifetime use. So far, so good…

    So where’s the catch? Well, as we say in the business world, “cash is king” and this is what is completely different from the financial crisis. Big pharmaceutical companies are sitting on huge piles of cash, scanning the market for small, innovative biotech companies to buy instead of using their capital to develop drugs themselves. The small biotech companies are doing their utmost to garner attention from the major players in the pharmaceutical industry with smartly designed trials which show efficacy to their bigger brothers.

    Is the system in an equilibrium? Hell no! Health care costs are skyrocketing and have doubled in most developed countries in the last 10 years. The pharmaceutical industry is struggling with longer development times and huge governance costs, not to mention the pressure to find cures…

    I sincerely think we face a chronic autoimmune disease in the health care system, where the system is attacked by its own antibodies, placed in the system many years ago, and is now suffering from a chronic illness. Eerily similar to what it was meant to prevent, isn’t it?

    But what if we apply some of the lessons learned from the global economic crisis in order to cure the current illness plaguing the health care system?

    Remember what it’s all about…

    The people at the top of the health care food chain are cognitively disassociated from the people it was designed to serve…the patients! It’s just like how the executives in the financial sector forgot about their customers.

    My idea would be for pharmaceutical/biotech companies to team up with insurance companies, health care institutions, and patients to create dedicated task forces per disease with a shared cost/revenue model. Pharmaceutical companies with great views and expertise will be in more task forces and thus make more money. Innovative biotech pioneers can look for neglected task forces for rare diseases. This is what I call a shared, innovative health care system, where everyone benefits and gets what they want. Drug companies make money for their shareholders, governments reduce health care spending, and last but not least, patients get their cures.

    Simplicity rather than complexity…

    Bigger doesn’t always means better. With the global population doubling in just over half a century, in parallel we created the most complex system on earth to provide for our health care. An average blockbuster drug costs over 1 billion dollars and between 12 to 15 years to make it available to the public. A clinical trial culture aimed to design and meet pre-defined outcomes, with many patients failing to meet the inclusion criteria, is thus left to its own devices. In a recent blog, Dan Ollendorf, Chief Review Officer at the Institute for Clinical & Economic Review, pleads to implement the so called “adaptive licensing” model, whereby a drug is admitted earlier to the market, with open access to all patients. This should be paired with a monitoring system that prevents us from creating a “learning” system, but rather a “curing” system. If we could implement platforms that make this model more easily and readily available for patients, with less knowledge being hoarded by the system, I sincerely hope that we would be able to remove the one and only obstacle to true change… the existing mindset.

    Transparent as glass…

    The data that comes out of drug trials and the research undertaken by task forces should be made public at all times. In a system that basically has been paid for by the people, it should not be allowed to put information behind paywalls. Trial data should not be protected by intellectual property rights and I am not the only one with that opinion. 4 senior scientists from the European Medicines Agency write in the leading New England Journal of Medicine that putting clinical trial data in the public domain will make it more cost-effective to develop new medicines.

    The system itself has a responsibility to serve the people it is meant to protect, inform, and heal. Companies are rewarded for the results they achieve in the task forces, and publishers should develop a different business model aimed at elucidating rather than educating.

    Reinvent the governance model…

    We all have to rely on science, otherwise we would be forced to jump out of an airplane without a parachute and learn to fly (or wait for God to save us). Undoubtedly science should be at the core of all the above. Companies that claim over-the-counter-drug effects from fuzzy trial data can be part of the sketched model and scientifically prove their concept. It is, at last, a shared model, but also with shared responsibilities. No tricky business, just a clear, open, and honest approach between task force members, supervised by independent bodies with a clear mandate and the authority to protect the system from becoming ill again.

    Without ignoring the current costs of health care, I think we should start at the root of the problem. This will automatically lead to a significant reduction in the rapidly emerging problems of a global health care system on the verge of collapse.

    So far…but so good!

    One Man

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  • Freedom of Thought

    Freedom of Thought

    When I was 11 years old, I decided to take a stand, not just for myself, but for others as well. I jumped up on a crowded lunchroom table at boarding school, declaring that we hated the food we were being served and demanded better. Even though I had a right to an opinion at that age, unfortunately I didn’t feel like I was taken very seriously. However, a few years later the school did adjust some of their policies and even more importantly…the menu! I guess I’ve always had a bit of a problem with authority. 😉

    The reason I attended boarding school was because my parents and I lived on an inland barge that they also owned and operated. There were simply no other education options available. The years I spent at boarding school helped form who I am today and how I think about the world. Not that I am a socialist by any means, but I do believe in freedom of speech, freedom of choice, and most importantly in the freedom of thought. I also believe that despite one ‘s talent, not everyone can grow up to become a world-famous CEO.

    I have taken care of myself my entire life. Everything I do, I do with passion, focus, and a drive for success. Looking back, I have ticked many of the boxes on my bucket list, which I have of course extended over time. I am grateful for the life I’ve lived and happy with the choices I’ve made. That being said, I despise injustice, selfishness, and jealousy. In my heart, I want to improve the world around me and have a strong opinion about how to go about it.

    Having been confronted with a terminal disease, I have noticed that people bolster me with their love, and admire me for my strength and positive attitude in coping with my condition. However, I also sometimes feel a sort of skepticism, as if they have given up on me, thinking, “It’s too late for you mate, sorry…”

    Then my child’s feelings come back to mind and I get angry and more motivated to fight, but also disappointed that today’s society has individualized people to such an extreme. We have become more egocentric, not necessarily selfish, but in a way, we’ve forgotten what life is all about. We let our thoughts and fears be dictated by the media and have buried our inner philosophers. 2,400 years ago, Plato said, “There are two things a person should never be angry at, what they can help, and what they cannot.”

    I strongly believe in freedom of choice. This is what distinguishes us from all other living species. If a person wants to voluntary end his life, because he does not want to suffer from his disease any longer, that is his justified, individual choice. If others want to fight as long as they can, the same rule applies. Plato also said, “Death is not the worst that can happen to men.”

    People living with ALS/MND eventually lose the ability to speak, and in essence a bit of their freedom. However there is one thing we will never lose for as long as we live and is not affected by our disease. Therefore I now say that “silence is the fuel for our freedom of thought.”

    One Man

  • Knocking on doors…

    Knocking on doors…

    Social Media and Rare Diseases

    Like I said in my blog post entitled “Extraordinary Measures“, it’s all about BIG data. How can you make it easier to be discovered online? Especially when you want to connect with fellow patients, raise awareness for your cause, and raise more money for your disease?

    Here’s a short overview of what’s out there and some ideas to get started…

    Facebook

    In the world of social media, Facebook seems like a logical place to start; you already have a network of friends (and their friends) that can help you get more “Likes.” From a practical perspective, you have a built-in targeted audience who likes your page and is interested in you. What more could you want?

    There are over 150 Facebook pages devoted to ALS/MND. I probably haven’t found them all, but the point is that most of them are not connected to each other. The reach is limited to separate, local communities instead of a larger global one. To complicate matters, you also have to be very specific with regards to the content on your profile page and bio, otherwise your page won’t be found. It is a terrific medium for interaction and providing information, but you unfortunately still miss people that are not using the social network.

    Facebook also seems to be the wrong platform for fundraising. Maybe this will change when the platform introduces a payment system in 2014. Unfortunately, many Facebook users are only “viewers” and not “participators.” Judging from my own experience with my community of contacts, only about one third of my friends are active, with the rest (a dormant majority) only watching passively and occasionally interacting.

    Twitter

    The infamous 140 character message board of Twitter is not only useful for sharing news and pushing opinions to your followers, but also even handier for interacting with fellow patients and other advocates. However, it is crucial that you make yourself known to tweeters by using useful hashtags in your messages, having an informative bio, and keeping an up-to-date description of yourself on your profile. Otherwise you might remain hidden anonymously amongst the other 300 million users, sending roughly half a billion messages every day. I use programs like HootSuite and SocialBro to optimise my hashtags, to find fellow patients, advocates and associations, and to effectively target tweeters interested in other rare diseases and chronic illnesses.

    I can see that many users are not used to these tools, but rest assured that the amount of tweeters on rare diseases correlates with the real world prevalence of our conditions. This means that becoming a trending topic is hard work.  On www.symplur.com you can find the healthcare hashtags that are most used on twitter. It’s a very good start for you to have a look at how you can improve your chances of being found online.

    As a fundraising platform Twitter is useful to grab attention, but due to the structure of the tool, you always have to refer tweeters to an external site.

    Blogging

    There are many blogging sites, but the three I would like to mention here are Blogger, Tumblr and WordPress. Honestly, I only started blogging a couple of weeks ago. Why? Well, I guess before now, I wasn’t ready for it…and after doing some research, I ended up with choosing WordPress. The simple user interface and layout attracted me, but it is all very personal. You have to find the one which suits your needs. With blogging you can write your story and share your opinions in more than 140 characters…

    Video

    If you want to raise awareness, video is the way to do it! If a picture is worth a thousand words, a video is worth even more. You can show the world how relentless and cruel your disease is, that it needs everyone’s attention, and that a cure must be found…but hey, remember again, it’s all about the BIG data!

    Everyone wants to make a viral video like “Gangnam Style” and “Charlie Bit My Finger.” Or maybe not? Think twice about who your target audience is and who you really want to reach. If you want to reach the entire world, take another look at my blog “Extraordinary Measures.”

    Email 

    Most people think that email is over, but I would argue from my own experience that for fundraising purposes, this is absolutely not true. Out of a targeted email campaign sent to 1,300 addresses, I got over 50% to open, 14% to click and 3% to actually donate to my charity. Whether or not you possess  a large database of email addresses, email is still the best way to get people into action and donate for your cause. If you think it’s too difficult, just try MailChimp for free and you will see that it’s dead simple.

    World Wide Web

    A website is still the best way to inform the public, but the landscape of design and setup of websites is rapidly changing, pressed by the growing prevalence of tablets. Today’s websites should be very simple, with fewer buttons and preferably, a scrollable one-page design.

    Many of you won’t need a website as you can easily refer to the homepage of your local associations, but for fundraising purposes, there are many online platforms, such as Fundly, GoFundMe and JustGiving, where you can initiate your fundraising action for your cause and connect it directly to your charity. Keep in mind that you still need to promote this via Twitter, Facebook, etc.

    I hope I’ve helped to guide you through the various options you have to advocate for your illness via social media. Let’s all work hard to improve the attention for our causes!

    For various reasons, like small communities, only news or photo sharing, etc., I have left some options out of my review. Here are some of the others: Google+, Scoop.it, Instagram, Pinterest, and Flickr.

    And if this digital forest of possibilities still seems a bridge too far, well get your hat, go out and start knocking on doors to tell your story…

    One Man.

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