Tag: motor neuron disease

  • Building bridges…

    Building bridges…

    HiRes

    Someone recently called me a “patient” entrepreneur. Yes, I am an ALS patient, but no, I am definitely not patient! 🙂

    The things I undertake to battle my disease can be described as entrepreneurial. However, it’s just who and what I am. Do I have a choice? I certainly do, although I can’t help being me. Don’t put me in a wheelchair and ask me to just stare out the window. It would probably break me… Don’t sit me in front of a TV. I’d probably just switch that crap off! Don’t give me face time with politicians unless you want me to tell them what their doing wrong. I’ll lecture businesses on what to do and how to spend their money, and scientists on what they should try to discover. Now, surround me with my fellow patients and I immediately feel a compassion that fuels my drive to find a cure. Facing my family fills me with love—something that everyone needs in their life!

    On my journey, I encounter stigmas towards patients, rigid social dogmas and oftentimes, outdated scientific paradigms. I am surprised at how our society has embedded fear into the roots of the very stakeholders that should be striving to make a difference, instead choosing compliance and governance over innovation and revolution. What has happened to the revolutionary mind of mankind that brought us to where we are today? How can we call ourselves innovators, when in reality, we’re just maintaining the status quo?

    Cultural and national differences are amongst the challenges I face in my endeavours, but our disease is global. It has no borders and certainly needs a more cosmopolitan approach. One of the lessons I try to share with others is that despite the adversity being faced, cultural norms dictate that people are always approaching it from different angles. We must be compassionate, but not blind. In my opinion, this is the only way to fill the pre-judged gaps in our opinions.

    As human beings, we are the only species that can feel both love and compassion. We have evolved beyond the confines of natural selection where the weak are left to themselves and the strong survive. When we combine compassion with our will to survive, we can overcome many issues and hell yes, even make the weak stronger!

    Right is not always right, and wrong is not always wrong. Hence, why I keep building bridges…

  • Entrepreneurial scientist…

    Entrepreneurial scientist…

    HiResI regularly hear leading scientists say that patients can make a difference by being closely involved in projects that could ultimately lead to breakthroughs for their diseases. On the other hand, I also hear researchers say “leave the science to the scientists” and that we shouldn’t get involved because of our biased opinions. Contradictio in terminis or a rusty scientific paradigm?

    You can’t deny that a certain subjectivity exists when it comes to patients being involved in research projects related to their own diseases. With the amount of knowledge that’s now only a quick Google search away, I don’t blame researchers for their hands-off opinions when it comes to dealing with patients. However, this type of knowledge has become such an abundant, primary source of hope and inspiration for patients with rare diseases, that even when restricted by paywalls, these patients are often more up to date with the latest breakthroughs and information than their doctors.

    Certainly, entrepreneurial patients like myself have strong opinions. We don’t take no for an answer. We can be instrumental in the process to develop new drugs for our diseases. We can accelerate development times because of our devoted focus. We are the ones who can help translate basic research into real products. Why? Because we have a vested interest in how this all turns out. Our intimate involvement with our diseases gives us the passion and the power to combine our business skills with the scientists’ practical knowledge in a robust collaboration. Biased or not, it doesn’t really matter, the ultimate goal to find a cure is what binds us to our cause.

    In the biotech and pharma industry, translational research is more common in certain parts of the world, like the USA, where companies collaborate at an early stage with academic institutions. With rare diseases like ALS, it is essential to do so. However, there is still much to learn. Academics should share their discoveries with companies and patient groups at a much earlier stage, instead of caring about publication dates. Some breakthroughs take almost a year before becoming public knowledge. That’s another year lost translating them into real products. When the papers are finally published, accompanied by a positive press release, the scientists continue researching in another direction, leaving their discovery for the business world to pursue.

    Innovation, and ultimately curing patients, is halted by this scientific paradigm. This really should change. Scientists should actively engage with fledgling biotech companies and offer them their “off paper” insights in return for a small licensing fee when the efforts prove successful. At the end of the day, it’s all about shared value, shared success and curing patients. At least it should be… Researchers should transform themselves into entrepreneurial scientists, while the business men and women should become more like scientific entrepreneurs.

  • Our progress

    Our progress

    I haven’t been blogging for a while. It hasn’t been due to a lack of inspiration, but it’s been more a matter of finding the time, while trying to balance multiple priorities.

    The last two months have been exciting, but also hectic and exhausting. Where 2013 was a year of planning and making preparations, the time has now come to execute those plans. In January, I got together with fellow patients Robbert Jan en Garmt to discuss our strategy and to clarify the path forward. It turns out that we have 35 projects on our plate! So we have a lot of work to do, but we found time to make a nice picture of us three 🙂

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    Along with former classmates, Garmt recently organized an MBA class with a group of MBA students to discuss our strategy, centered around the following 5 pillars: patients, funds, cause, cure and care. We received a lot of great feedback from a business perspective. On the other end of the spectrum, I collected some very useful scientific feedback while attending the ALS/MND congress last December. We’ve had multiple talks with large biotech investors, health insurance providers, and other influential stakeholders, including visits to research centers in Europe that are focusing on a variety of innovative technologies. We’ve discussed hypotheses with key thought leaders and investigated the overall ALS/MND market worldwide.

    We make every effort to prepare ourselves as thoroughly as possible and do not want our efforts to ever be compromised by a lack of resources. Because of this, we try to have a leader for each project and at least one or more patients involved, as well. We are assisted by numerous experienced, skilled and enthusiastic volunteers. You could say that it’s now full speed ahead!

    In the coming months, I will regularly update you on our progress, so stay tuned…