This Is MS Multiple Sclerosis Knowledge & Support Community

Hi

I have a somehow unconventional idea that I would like to discuss with a broader audience.

It's basically about establishing an investment company that is backed/held by people with MS and their relatives and mainly invests in small companies involved in the development of new therapies.

Formulated as elevator pitch, it could be something like this:

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,
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.

I set up a small website where I explained my intention and my thoughts in more detail:
-> http://butterflyeffectproject.jimdo.com/

Also, I set up a discussion forum to have a platform to discuss it:
-> http://butterflyeffect.onegoo.net/

Please have a look at it and join the discussion.

(Don't be discouraged by the fact that there aren't a lot of entries in the forum yet. Until now, I just asked a couple of friends to join the discussion.)

I'm really serious about it, but I cannot do this by myself. So, I'm looking for people with the appropriate knowledge to discuss this idea.
And, if the response is positive and supportive, I would also need people who help me to realize it. But this is something that lies in the future.

As a software engineer, I can estimate the technical side of this idea. But I have a lack of knowledge in certain areas, mainly:

• legal questions concerning incorporating or funding an organisation like this
• crowdfunding and social media marketing
• clinical trials
• what is important for small biotech companies, what makes their life easier
• and a couple of other topics that are necessary to realize such a project

As a first step, I would appreciate if I found people with experiences in the mentioned areas who are willing to discuss my idea.

Also, if you know a person who could be interested and could provide meaningful input to the discussion, please let this person know and ask her to join the discussion.

And, if you like the idea and just want to be kept informed about it, and then use one of the suggested ways to stay in touch (http://butterflyeffectproject.jimdo.com/contact/).

Again, I'm truly serious about it, and I'm looking forward to discussing it with other people from the MS-community.

Thanks for your help and contribution.

Cheers
Hansjörg

Of possible interest, the CCSVI Alliance is a non-profit that was founded by several members of this forum.

http://www.ccsvi.org

Fund me! Fund me!

Sounds like a good idea to me. I commend you for thinking of a free market solution to funding problems for small research firms and at the same time advancing research in MS by companies other than the major pharmaceuticals. It also turns donations into investments, so people have a possibility of making money on their donations (investments).

I don't have the skill sets you're looking for but I might buy shares in the fund if they become available.

BTW Have you tried contacting Tisch MS Research of New York? Their stem cell research sounds promising, but they are facing funding problems.

@1eye: it depends on what you can offer, and then we can talk about funding you! But first, we will have to find enough donors, right?


But let us be serious because I'm serious about my idea and let me write a couple of lines, why I came up with it.

(I tried to summarise a couple of statements that I also made on http://butterflyeffectproject.jimdo.com)

In January 2011, after completion of their phase IIb trial, Opexa
Therapeutics received the approval to start the phase III study für Tovaxin/Tcelna used as therapy for RRMS.

To me, the results of their phase IIb study were quite promising:
- the first personalised treatment
- no severe side effects besides mild skin reaction after the injection
- an average ARR (annual relapse rate) reduction of 37% compared to the control group
- an average ARR reduction of 56% compared to the control group with patients who had an ARR > 1 before the study
- only five injections per year are necessary

These results looked at least as good as the CRAB treatments, which were available five years ago.
I've been watching my wife injecting Copaxone for over six years, every day. I saw her experience "post injection syndromes" and I saw her having severe skin reactions - every couple of weeks or months.

So, I was looking forward to seeing start the phase III study of Tovaxin/Tcelna for RRMS patient. And what happened? They were not able to fund it. If I remember it correctly, the CFO of Opexa stated, that they would need about 30 million USD to conduct the phase III study. That was frustrating, and I started to think about the why.

There are over 2 million people diagnosed with MS on the planet. Most of them live in - let's say richer - countries. Taking into account the closest relatives there have to be more than 10 million people with a very strong interest in making new therapies available.

10 million people and 30 million USD: this seems possible. Of course, I know that is not that simple, but it is also not completely out of scope.

Moreover, let's have a look at the donation landscape.
The "National Multiple Sclerosis Society" of the USA received 100 million USD in donations in 2014. Comparing this with 400'000 people diagnosed with MS in the USA, that makes around 250 USD per patient just in 2014.
The "MS Gesellschaft Schweiz" from Switzerland (that's where I'm from), received in 2014 about 12 million USD. With around 10'000 people diagnosed with MS in Switzerland, this is even more than 1000 USD per patient in 2014.

Again, to fund the phase III trial of Tovaxin/Tcelna, 15 USD per MS patient on the planet would have been necessary.
In the case of the "National Multiple Sclerosis Society" of the USA, this would equal to 6% of donations per patient and in the case of the "MS Gesellschaft Schweiz" this would have been 1.5%.

Don't misunderstand me. I don't want to drain the money from these organisations. It's about the proportions. It is about understanding how much money is being donated to MS purposes. It is about understanding how huge the support is inside the population.

All the figures lead me to the conclusion that enough money and support is around.

So the big question is:
- if there is enough support in the population
- and if there is enough money around
- and if there is a large community that should be very interested in this topic
why wasn't it possible to raise the needed amount of money to progress with the phase III trial study in the case of Opexa?

I believe it is because we don't have an organisation like the one proposed. An organisation that acts on a commercial basis in the interest of MS patients and their relatives. An organisation that can invest and can take certain risks, because the possible benefit is not only measured in dollars but also in a significant improvement health-related quality of life.

So, again. If you think that this is not the most stupid idea you ever heard of, go to http://butterflyeffectproject.jimdo.com/contact/, use the different ways to stay in contact and, therefore, to show me, that there is an interest. Moreover, register at http://butterflyeffect.onegoo.net/ and join the discussion.

Thanks.

Hansjoerg

Opexa has significant money problems. Their stock has had 4 reverse splits over the years reducing the share value by a factor of 16,000x. http://www.thisisms.com/forum/tovaxin-f ... ml#p236922

However, another potential problem with Opexa is that their research model is based on the hypothesis that MS is an autoimmune disease. This is an assumption for which there is a growing body of evidence which suggests that it may not be correct.

@NHE: since I own a couple of Opexa shares, I do understand your point.
I referred to Opexa because it was my trigger to start thinking about the whole situation. But nonetheless, to me it looks still as a candidate that should be supported. Of course, I do agree that it very likely does not solve the cause of MS. And yes, MS is probably no autoimmune disease. But as long as we don't understand the root of MS, we should examine and investigate all possibilities that help to slow down the progression of MS. As far as I understood, most of the available treatments - at least the ones considered as base therapies - are based on trying to influence the immune system.

The point I'm trying to make about Opexa is the following:
The results of Tovaxin/Tcelna look promising in January 2011. If the needed money to start the phase III trial had been available then and if the results of phase III had confirmed the results of the phase IIb study for RRMS patients, we would have now (or at least in a few month) a new treatment in the market. One that showed clearly showed signs of being well tolerated, having fewer side effects. I mean, this could increase the quality of life for many patients.
But now, we don't have it, we are waiting for the results of the currently running phase IIb trial that we can expect in a year. And then it will be another four years until the treatment could finally be introduced in the market.

From my point of view, we lost four to five years.

I believe that every additional option is a good thing. Also, everything that shows clear signs of being effectual should be persuaded. But that needs funding. And funding is a problem, but I also believe it is something that could be solved at least partially by the MS-community itself.

Below is an excerpt from http://forbes.com/sites/brucebooth/2015 ... al-making/ that shows the invested venture capital in the development of new MS treatments during the last 10 years. It is not that much.

in Millions USD: Now compare this to the MS drug market, which is over USD 15 billion a year, or the donations received just by "National MS Society", which was USD 100 million in 2014.

TISCH could be the next candidate that will struggle to receive enough fundings to progress smoothly.


We probably cannot invent new therapies and or find the cure for MS. But I guess the MS community is big enough to move obstacles out of the way for those people who are working on developing new treatments.

Having an MS-community based investment company could help or is at least an idea that is worth to discuss.

I don't care, if we discuss it here in this forum or at http://butterflyeffect.onegoo.net/. But I do think, that we should discuss it. And therefore, I'm still looking for people who would like discuss it.

Hansjörg