For MS-patients and their relatives
who are dissatisfied with their lack of possibilities to support the development of new MS therapies
We establish an Organisation/Foundation
that brings together other MS-patients and relatives from all over the world,
in order to provide them with the possibility to grant venture capital to small biotech companies, and, therefore, to support clinical trials and the development of new MS therapies.
Unlike other MS-organisation
who directly support people with needs and focus on alleviating the consequences
this organisation invests the raised capital directly into the research and development of new MS therapies with the main goal to accelerate the development of new therapies.
An organization like proposed could provide the following benefits compared to existing foundations.
An organization, supported by a global community with a strong common interest, could act quicker and more focused if new opportunities arise.
Autonomy / Profit orientation
Compared to a foundation who is freed of taxes but has to follow an altruistic approach, an organization as described under "The VISION" could invest in other companies and could make a profit which then could be reinvested in other projects or companies. The market size for multiple sclerosis treatments is estimated to reach almost 20 billion USD.
My name is Hansjoerg, born 1972, living in Switzerland. I'm a Software Engineer and my wife has been diagnosed with MS in February 2007.
Of course, during the last couple of years I consistently looked at available treatments and new therapies being developed.
One promising therapy I found was Tovaxin/TCelna from Opexa Therapeutics. And in 2008 they had promising results for their phase 2b clinical trial for RRMS patients.
I really got frustrated when I saw, how much trouble they had and still have to finance the further steps of development.
Thinking about that over and over the last couple of years, I really do believe, that it doesn't have to be that way. There are over 2 million MS patients on the planet. Together with relatives and friends, there must be a community with over 10 million people who care about this topic and are willing to help and to support.
Furthermore, with all the different social media and communication platforms which we can use today, I also believe that it should be possible to reach enough of those people. And it should also be possible, that we are able to form a community, that could directly support and push the further development of treatments for MS.
Two to three years ago, I tried to establish such an organization by myself. But realized that being a software engineer I have a lack of needed knowledge especially in the area of legal
questions. So, somehow I got stuck. But the idea never went away and I'm still convinced, that it would be worth trying it.
So, I'm taking another approach, but this time, instead of trying it to do by myself, I'm asking the community - that means YOU - for help.
I have two intentions with this website and the forum I set up.
First, I would like to figure out, if there is an interest in the community for such an idea. Therefore, if you think that this is an interesting idea, that I should keep pursuing let me know by leaving your Email-address, following on Facebook or on Twitter or register at the forum. See the "CONTACT" page for details.
Second, I'm looking for people who are willing to discuss this idea further. Therefore, I set up a forum for that at http://butterflyeffect.onegoo.net/. How you can register at the forum is explained at the "CONTACT" page.
It’s all about speed and time. It’s about pushing things forward as fast as possible because when we talk about a disease like MS, speed of development is crucial.
Think again about Opexa… if the money had been there three years ago, we could be close to the end of phase 3 trial for another promising treatment of MS.
But even if we missed this change, there is a good reason, that other opportunities will arise.
Why do I think so:
The processing power of computer hardware doubles still every 18-24 months. Today, our smartphones have more processing power than our desktop PCs did 10-15 years ago.
The web provides us with scalable processing power that can be rent based on custom needs and we even have access and can use “super” computers (for instance IBM's Watson-as-Service).
Data and knowledge are being shared, accessible globally and the longer the more available in a structured way, that can directly processed (e.g. Open Knowledge).
The availability of MRT has doubled during the last five years, and the data of MRT scans can be sent within seconds to almost every place on earth.
Due to the available processing power, speed and accuracy of image recognition have increased a lot and will be further increasing (a good example is cancer diagnosis with IBM's Watson super computer).
Furthermore, more processing power and the availability of more data leads to better and faster simulations, that predicts the effectiveness of new therapies better and better.
Think about the following statement from the book "Bold":
“This is why, in 1995, the National Institute of Health estimated it would take fifty years and $15billion to sequence the first human genome. But in 2001, Dr. J. Craig Venter completed the task in nine months for $100mio. Today,... you can sequence billions of letters of your genome in a few hours for about $1000.”
Think about that again: In 1995, "experts" forecasted, that this task would take 50 years and cost 15’000 million USD. Six years later it was completed in about 10% of the predicted time and at
the cost of 100 million USD, less than 1% of the predicted costs.
And today, you can download the whole data of this project FOR FREE and put it on a memory stick you can buy for less than 20 bucks.
The point that I'm trying to make: Things are changing at an amazing speed. Things we can’t imagine today can be proved as possible within in a couple of years.
As a consequence, it is getting easier for small companies to participate in developing new therapies.
Of course, development still needs money and especially for clinical trials. And that is where an organization like the one proposed could jump in and provide support.