Met with Top Research Honchos Today; Both Open to CCSVI

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

Met with Top Research Honchos Today; Both Open to CCSVI

Postby marcstck » Thu Dec 03, 2009 5:37 pm

I was contacted earlier this week by Hollie Schmidt, the VP of Scientific Operations for the Accelerated Cure Project, and Rusty Bromely, the COO of The Myelin Repair Foundation, who were in town for a research conference here in New York. They knew of me from my Wheelchair Kamikaze blog, and wanted to know if I had time to meet with them. I was shocked that they knew who I was, and of course quickly agreed.

http://www.acceleratedcure.org/about/pe ... ion=2&id=7

http://www.myelinrepair.org/about/manag ... ml#Bromley

I met with them today at a nice little café, and we spoke for over 2 1/2 hours. Both were extremely personable, and incredibly smart. We discussed a wide range of subjects, from research funding to the promise of stem cells for nervous system repair to CCSVI and Zamboni.

Hollie and Rusty both were open to the notion of CCSVI. Rusty had an interesting take on the matter of iron deposition, saying that he didn't think it was being deposited by the reflux of blood itself. He believed that if CCSVI it was indeed responsible for the iron deposition being found in MS brains, it was because the reflux of deoxygenated blood was leading to the death of oligodendrocytes, which in turn were releasing iron into the brain. Needless to say, I was blown away by the fact that he was so well-versed in the theory that he could make that distinction.

Both thought that the theory was very worthy of further research, and should be relatively easy to prove or disprove. They also welcome the fact that the theory will at the very least push researchers away from the "autoimmune theory", and start attacking multiple sclerosis from different angles.

The Accelerated Cure Project is building a repository of blood samples from MS patients (currently they have over 1000 samples) for use by researchers around the world. The Myelin Repair Foundation is dedicated to breaking down the barriers between researchers and bringing promising research as quickly as possible from the lab to the clinic. They are concentrating heavily on stem cells, and believe they may be able to synthesize the chemicals that stem cells secrete when they effect tissue repair, and turn those chemicals into an easily deliverable drug.

All in all, it was a fascinating afternoon, and I feel incredibly honored to have been invited to this sit down. If you're looking for worthy organizations to make holiday donations to, I'd definitely recommend The Accelerated Cure Project and The Myelin Repair Foundation. Both could use as much funding as possible, as much of the money donated to MS research is gobbled up by the NMSS, which only devotes 17% of donated funds to research...
Last edited by marcstck on Thu Dec 03, 2009 6:53 pm, edited 1 time in total.
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Postby CureIous » Thu Dec 03, 2009 5:43 pm

Wow, talk about a scoop. Impressive interaction, especially his take on iron deposition, very interesting indeed. Well done! Thanks!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby ozarkcanoer » Thu Dec 03, 2009 5:48 pm

:D Well done, Marcstk !!! :D I am looking at these two fine organizations. It has always bothered me how little the NMSS gives to research, and I have sponsored two walks and 6 bikers two years in a row.
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Postby TFau » Thu Dec 03, 2009 5:58 pm

Very cool! I will definitely be re-directing my donations!
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Postby bestadmom » Thu Dec 03, 2009 6:14 pm

Marc, you're a rock star! This is great news and I'm glad they are open to it. That's what we need - inquiring minds.
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Postby cheerleader » Thu Dec 03, 2009 6:19 pm

Nice work, Marc!!! Holly and I have e-mailed a bit, and she is a capable and energetic force for MS patients. SO glad you hooked up with Rusty from the Myelin Repair foundation. For folks that don't know, Accelerated Cure and the Myelin Repair Foundation are both proactive charities run by and for MS patients. Your monies and energies could really benefit these organizations.

Wish I'd been at that cafe table, Marc...must have been a wonderful, invigorating discussion. Rusty's take on the iron deposition makes sense to me, since I've always felt it was primarily hypoxic injury (like stroke) leading to cellular death- and that's why Jeff felt so awake immediately after his procedure- he was getting oxygen. Wow.... Still so much to learn.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Ruthless67 » Thu Dec 03, 2009 6:43 pm

marcstck,

I though I had read something about Oligodendrocyes somewhere in my travels through the internet for answers. It was here, an article called, How does Multiple Sclerosis do it’s Damage? http://www.mult-sclerosis.org/howms.html

The article said “Oligodendrocyes belong to a larger grouping of maintenance cells called glial cells. Their importance has recently become better understood and, as more and more is discovered about MS, the more central oligodendrocytes, or more accurately their death, has become. In some ways, it is fair to say that multiple sclerosis is a disease of oligodendrocytes.”

So here’s the answer to the WHY question!!!!!! Amazing!!!!!!!!! If it’s true what Rusty said, and I have no reason to doubt it, here is the aha moment!!!!!

"if CCSVI is indeed responsible for the iron deposition being found in MS brains, it was because the reflux of deoxygenated blood was leading to the death of oligodendrocytes, which in turn were releasing iron into the brain"

But I read this article long before reading about CCSVI and having absolutely no medical background, I probably never would have remembered without your post, nor would I have been smart enough to put two and two together! lol :lol:
Thank goodness for lay people like me there are far more knowledgeable folks on this site!
And what a day you must have had, and to be sought out, what an honor! You rock Wheelchair Kamikaze!!

So if we put the two statements together we get:

Oligodendrocyes belong to a larger grouping of maintenance cells called glial cells. Their importance has recently become better understood and, as more and more is discovered about MS, the more central oligodendrocytes, or more accurately their death, has become, because, the reflux of deoxygenated blood in the CCSVI protocol leads to the death of oligodendrocytes, which in turn releases iron into the brain!!!!!!!!!”

Lora
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