After Bologna- What can we do?

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

Postby bestadmom » Mon Sep 14, 2009 11:12 am

I just got cc'd on an email from the CFO of the NMSS asking her associate to contact me re CCSVI. I hope they get to me before I leave for Buffalo in 45 minutes.
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Postby daniel » Mon Sep 14, 2009 12:46 pm

javaneen wrote:We should all make flyers and put them on people's car at everyone's local MS walk. I know I participate in the MS walk every year and there is always a flyer on my car when I leave with info about MS. We could make flyers with links to youtube video's and facebook sites...and of course TIMS. I really think that would get the word out to people with MS very quickly.

I like this idea. We need to get a pamphlet designed with all the most relevant information. Any marketing people in the house? =)
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Postby CNClear » Mon Sep 14, 2009 3:11 pm


Are you going to Buffalo to meet with the diagnostician who is trying to set up a way for people with MS to get tested for CCSVI? I don't know a whole lot about him/her and if anyone has any info, I would be most appreciative...

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Postby zap » Tue Sep 15, 2009 10:52 am

Perhaps the MS Society is the place to really push - charged as it is by its supporting members with seeking a cure. It has local chapters where we can push from ground-up recognition and sesearch. Get letters published in their publications. Contact board members. Encourage them to spend the money they receive on investigating CCSVI and not just EAE model studies, etc.

One way the National MS Society propels MS research forward is by funding high-risk, high-potential pilot projects to investigate new, untested ideas and attract new researchers to the field. These unique one-year grants allow researchers to quickly gather data needed to determine if their novel ideas are worth pursuing. A researcher who submits a pilot research proposal will receive fast-track reviews and approvals to speed the testing of new ideas.

* One-year grants for $33,000 (as of summer 2008)
* Any topic or technique relevant to MS research
* Quick turnaround: applicants usually know within 2 months if they will receive funds
* Pilots attract new talent: About half of pilot grant recipients are new to National MS Society funding
* Over 70 funded each year (We have temporarily suspended new applications to this program while it is being evaluated to ensure it is meeting the changing needs of the research community.)

Why no mention of CCSVI here? ... index.aspx
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