We need your input on a very important decision

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

We need your input on a very important decision

Postby Vonna » Fri Feb 26, 2010 12:22 pm

We need your input on a very important decision.

Do you feel the MS societies are supporting CCSVI in an appropriate manner?

Are they doing all they can do, and representing the interests' of those with Multiple Sclerosis?

Is CCSVI research and treatment at the appropriate stage today, or should more be happening?

We have discussed the possibility of a Multiple Stenoses walk taking place the same day as the official Multiple Sclerosis walk. We would raise awareness and funds to support being tested and treated as soon as possible as many feel that they don't have time to wait years for the clinical trials to take place.

Do we really need to prove how many patients with MS have CCSVI before moving to the next step? Hasn't the strong correlation already been proven?

Those with CCSVI have a medical problem that is causing micro-hemorrhaging in the brain. Should we wait years for clinical trials to be carried out before fixing this? I read yesterday on the MS societies website that they are fast-tracking medications such as Amplimmune so that development of new treatments can be available sooner.

Do you feel that CCSVI needs to be fast tracked?
http://www.nationalmssociety.org/fast-f ... index.aspx
Fast Forward acts as a catalyst, connecting people, ideas, and vital resources to accelerate the development of new treatments for people with MS. We bridge the gap between groundbreaking research knowledge, and the commercial resources necessary to move those discoveries into the drug development process. Bringing treatments to people with MS - Faster.

http://www.nationalmssociety.org/news/n ... x?nid=1975

“We are pleased to partner with Amplimmune to advance the development of new treatments for MS,” said Dr. Timothy Coetzee, President of Fast Forward.

The National Multiple Sclerosis Society funds research in a range of scientific areas including immune mechanisms, genetics, nerve regeneration and symptom managements. The agreement with Amplimmune is a part of the Society’s Fast Forward initiative through which Fast Forward will partner with young innovative biotechnology and pharmaceutical companies to develop treatments, diagnostics, medical devices, and related technologies to treat, reverse and ultimately cure MS. Under the terms of the agreement, Fast Forward will provide Amplimmune with funds to support preclinical development of AMP-110. In consideration, Fast Forward will receive warrants to purchase shares of the company.

Fast Forward’s partnership with Amplimmune continues to expand its role in spurring MS drug development in the emerging biotech market and follows on its successful alliances with Apitope International to fund a proof of principle clinical trial for a peptide therapeutic vaccine and with Provid Pharmaceuticals to develop a novel compound intended to redirect abnormal immune response. It also builds on Fast Forward’s $19 million collaborative partnership with EMD Serono to accelerate innovation and commercial development of MS therapies through a group of soon to be determined, mutually agreed upon seed-to-early stage projects.

Emerging biotechnology companies face many challenges in the current economy, and Fast Forward is determined to deploy its resources to spearhead the continued development of promising MS therapies.

<shortened url>

A funding agreement generally includes a royalty share, warrants, and/or the rights to continue a project if the companies abandon the work. If the investment produces a return, the nonprofit group generally will use the money to cut more deals.

A recent example is a $1 million grant from the National Multiple Sclerosis Society to privately held Belgian biotech Apitope in exchange for warrants. The group believes that the decision to provide funding was validated when Apitope signed a development and commercialization agreement with Merck KGaA (MRK.XE) last week.

The funding came from the Fast Forward unit, which is run largely by people with venture-related experience. The organization plans to provide at least $30 million in funding over the next five years in similar deals to companies developing MS treatments.

Funding specific programs can be a more efficient use of money because they have results-oriented goals and timelines, as opposed to funding scientific findings that only end up in a published paper.

******************************************************

*It seems to me that this “venture” is very much related to profit for Fast Forward, and in turn to the National Multiple Sclerosis Society. He states that funding scientific findings are not “efficient use of money” because they only end up in a published paper.

*With attitudes like this, can we expect the NMSS to act on our best interest concerning CCSVI?

******************************************************

http://www.fiercebiotech.com/story/ms-s ... 2009-03-18

MS Society teams with Merck KGaA on $19M R&D pact
Under the deal, EMD Serono will join hands with Fast Forward, a subsidiary of the MS Society that partners on new technologies aimed at treating the disease.

http://www.nationalmssociety.org/fast-f ... index.aspx

Warrant driven
Although technically a not-for-profit firm, Fast Forward operates like a traditional VC and will share in the upside from its investments, said CEO Timothy Coetzee. “Our preferred instrument is the warrant,
which allows us to buy equity in the future,” he said. According to Coetzee, Fast Forward’s warrants are less dilutive than the direct equity, royalty agreements or cash multiples favored by other venture philanthropy organizations and thus make the companies more attractive to other investors in subsequent funding rounds. Coetzee emphasized that as an affiliate of the MS Society, Fast Forward’s primary aim is to advance technology for patients. “The point is not to create a revenue stream, though if this happens, that’s great,” he said.

Also, please see:
http://ccsvivictory.club.officelive.com ... erest.aspx

We are very much looking forward to hearing from you on this. It is imperative that we work together as a team, therefore, we need your input. We are not interested in hampering CCSVI research, therefore need to know how you feel. Even if you disagree with a multiple stenoses walk.
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Postby Cece » Fri Feb 26, 2010 12:42 pm

I think a CCSVI or Multiple Stenoses walk or event is appropriate. I wish I had the time/energy/money to be more involved. I do not think it needs to be aggressive or in-your-face to the MS Society. Not sure where the right balance is.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby youbetcha » Fri Feb 26, 2010 1:22 pm

I would definitely participate and support a Multiple Stenosis Walk and will NOT do the same for MS Society. Obviously, I can't participate in a walk being held in the US but I would donate to the cause.
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Postby thisisalex » Fri Feb 26, 2010 1:47 pm

the Walk is a great idea!
especially when held parallel :)
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Postby bohemianbill » Fri Feb 26, 2010 1:56 pm

Vonna, love the vision, what is needed most is a uniform CCSVI Message,

I have stated on previous threads that education with a worldwide uniformed message needs to be articulated. Go were the people are, it will take too long to reinvent the wheel, (new walk). lets take advantage of the system in place! Lets educate the people that will lend to our voice, those that already spend their time and money fighting MS.
What is needed is a singular message re: CCSVI, lets develope a message that can be stated by all that support CCSVI, as it stands we are too disjointed with our message

Keep the heat to the feet

BB
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Postby Vonna » Fri Feb 26, 2010 2:04 pm

I agree bohemianbill, we need to unite!
Have you checked out the CCSVI Worldwide Victory website?
http://ccsvivictory.club.officelive.com/default.aspx

I am working on banners, avitars, thumbnails, e-mail signatures and such. There is so much to do. We need to all work together on this.
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Postby bohemianbill » Fri Feb 26, 2010 2:22 pm

Vonna, yes I have joined already, I am not very good at condensing/articulating the CCSVI message , we need a single page information bulletin re CCSVI. There are many on this board that have a comprehensive understanding of ccsvi , were it started and were we are today.

We need to develope a FAQ on CCSVI which I believe your site is already developing. So what is needed are the trail blazers of TIMS to join in. I consider TIMS to be the best MS reference site on the WEB. The people on TIMS are the experts and they know who they are, lets Unite and become a singular worldwide voice with a united message.

Along with a singular CCSVI focus like

http://ccsvivictory.club.officelive.com/default.aspx

Keep the heat to the feet

BB

The Ms Walk is approx. 2 months away, we eneed to kidde up if we are going to take advantage of this oppurtunity.
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Postby Vonna » Fri Feb 26, 2010 2:31 pm

bohemianbill, yes, I can use all the help I can get over on the CCSVI WWV site. I can't do it all alone. I am attempting to join everyone's individual efforts by providing links in every category of CCSVI possible. I need help with the FAQ page as I only have so much time. If you would like to get together a single page information bulletin, I'll be happy to post it.

Or, you could become an administrator and post it yourself...

The more united we are, the louder our voice, the more people will hear us!

Does anyone have a single slogan they would like to suggest?
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Important decision

Postby esta » Fri Feb 26, 2010 2:32 pm

I am more than willing to hand out brochures at our walk. Bring it on... if someone can design it, I can print my own and hand them out.
Yahoo...esta
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Postby Vonna » Fri Feb 26, 2010 2:57 pm

Here's a few quick ideas to get us started...

If you were experiencing micro-hemorrhaging into your brain, would you want to wait?

Dawdling could mean irreversible disability.

Acting now is sensible, waiting is irresponsible.

Neglecting a serious situation concerning health is Medical Neglect.

We have a serious health crisis here affecting more than 2.5 million people. It needs the world's immediate attention!
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Postby cathyb » Fri Feb 26, 2010 3:01 pm

Hey, Vonna!

As someone that has participated on more than one MS challenge walk, and as someone that has friends that have done the bike ride and the 'shorter' MS walks, one of the things the MS society always seems to have is corporate sponsorships. I have like 5 water bottles in my kitchen branded by Copaxone, we got tons of hand-outs of cream from Avonex, hand sanitizer, etc. All branded by the drug companies.
What if, instead of a corporation sponsoring something like this, we raised the funds and did it? Just an idea. We could give out, I don't know, something related to a walk or bike ride (a headband? a box of tissues? moleskin?) and brand it somehow. Then, we man a table, and give it out with the rest of the folks along the walk/ride, whatever.
Although it would take planning and fundraising, it relieves us of appearing 'adversarial' as we spread the message. The people that participate in these walks (certainly the challenge walk) have donated a LOT of time and effort to participate...I kindof think they should have their 'day'.
Just an idea. Its a little like beating the drug companies at their own game! ;)
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Postby bohemianbill » Fri Feb 26, 2010 3:02 pm

Yes I will help in anyway I can,

Slogan:

CCSVI a Piece of the MS PUZZLE-We need your SUPPORT to see just how Big of a Piece it is!

CCSVI The M.S. Chicken or the Egg?

CCSVI= M.S. Common Sense

CCSVI Lorenzo's M.S. Oil

CCSVI Block one of your veins and see what happens!

CCSVI=Hope for M.S. sufferers

CCSVI= M.S. Canada's next Olympic Effort

Please add your slogan and if you can help Vonna
n than indicate so

Keep the heat to the feet

BB
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Postby Vonna » Fri Feb 26, 2010 3:19 pm

Cathy, I am interested in how many people feel the same way as you.

I see the benefits you are listing of using the walk that is already in place. Do you really think that the MS Society would allow us to promote CCSVI at their walk? Most are still cautioning against being tested. They may end up having some sort of huge banner at their walk to "caution" people against testing. You know our plans will get back to them, this is a public forum.

The other issue, is that if we walk with the official MS walk, we are in essence supporting them, and "playing their game". We are letting the world know that they are doing a fine job, and they should continue to support them.

Is this the message we want to give? As long as people trust the NMSS to give the monies to CCSVI research, that would be great. I am concerned that most of the monies raised would go to drug research.

If we do what we have always done, we will get what we have always got.

Not trying to disagree, just bringing up thoughts to ponder.
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Postby bohemianbill » Fri Feb 26, 2010 3:40 pm

Cathy, Vonna,

1) the focus should be educating people on CCSVI, who,what,when,were,why

2) if people that are informed want to be tested that is there democratic right, and there money!

3) it has taken the MS society 30 years to develope there MS Walk fundraiser, its incomprehensible to think CCSVI could start one in 2 months.

4) we can go to every MS walk and hand out educational literature on CCSVI,
anybody can apply to their municipality to obtain permission to set up an informational booth on the path of the MS Walk.

5) We can approach Rona and ask their permission to hand out CCSVI literature on their property after all we are customers too! Actually i would prefer just to show up.

6) the whole intent is to obtain media coverage that there is a possible research alternative to MS. Without public support CCSVI will die on the vine like it did 80 years ago

aimho

Keep the heat to the feet

BB
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Postby cathyb » Fri Feb 26, 2010 3:49 pm

Hey, Vonna

I guess my approach is more about raising awareness, not fundraising for CCSVI per-se. The people on the challenge walk will have already done their fundraising by the time they get to the walk, so they are post-fundraising (the MS society requires a minimum $$ donation just to walk in the 3-day).
The drug companies that give things out at that walk aren't participants, they are posted along the route. (again, not sure about the bike or the shorter walks.) The companies sort of hide in plain sight... they give out something that appears unrelated to the item (like a waterbottle) when what they are really trying to do is to get people to ask their docs about a drug (like Capaxone).
As to the MS society allowing us to do something like this, they may not like it, I really don't know. But if we have enough $$ behind us they might be willing to discuss it. The beautiful thing about this approach is that people take the items home, they use them, then people in their lives say: "Hey, whats Capaxone?" We want them saying: "Whats CCSVI?"
As for the people on the walk, speaking from experience we always felt we were doing something very proactive being on the walk and participating. I don't think it ever occurred to us that the funds wouldn't go someplace we'd want them to go. Plus, by the third day we were too exhausted and dirty to pay any attention to people along the route, and our feet hurt too much. ;)
Cathy
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