Creation of the March of Dimes

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

Creation of the March of Dimes

Postby Ruthless67 » Mon Apr 12, 2010 9:16 pm

Hey All,

On PBS tonight I watched “The Polio Crusade”. It’s a half hour show and what an amazing story, what a similar fight as with CCSVI. Looking for awareness, funding, testing and answers. It was enlightening to me, I was only vaguely aware of Polio because I was born in 50’s so the scare was over but was still on our folks minds and I do have a bump on my left arm from my Polio vaccine shot. But I had no idea of the struggle and how “a single dime from each American” added up to the March of Dimes, and millions of dollars to fund the research that ultimately brought about the cure

http://www.pbs.org/wgbh/americanexperience/films/polio/

Basil O’Conner - Was a man who was determined to find an end to Polio, he founded the March of Dimes as a way to raise the needed research money. He had two promising doctors doing the research with two very different ideas on how to approach the research, and what type of vaccines might work and just how and when to administer the vaccines.

Dr. Albert Sabin - Was working on a Live Vaccine that contained live polio and wouldn’t be ready for 5 to 10 years. He felt that Dr. Jonas Salk was proceeding too rapidly. Dr. Sabin does everything in his power to undermine the work of Dr. Salk. He even goes so far are to say, “Vaccinating patients with Dr. Salk’s vaccine is a “Threat to human life” and felt that testing on human patients was “ill-conceived” and they should wait for his oral vaccine to be ready.

Dr. Jonas Salk - Was working on a Killed Vaccine which he said would stimulate the creation of anti-bodies in patients. He went on to vaccinate patients (They were called, Polio Pioneers!) and after two years when they were re-tested, indeed they had anti-bodies present and had not contracted Polio.

If you get a chance to watch the segment, I think you’ll see the similarities in the struggle for research funds and answers in a timely manner!! Maybe someday the CCSVI Alliance will be able to raise millions for continuing research. :D

Lora
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Postby sbr487 » Tue Apr 13, 2010 1:40 am

Great post, Lorra. I have no doubt that behind every major pioneering discovery, a story of such nature is not common. We should never forget the selfless sacrifice researchers had to make in their era so that we live a safer life today.

The story of Dr. Marshall and H. Pylori is similar one. I dont know how much of it is true, but it seems he had to go through a lot of criticism. He consumed H. pylori to prove his theory.

As long we have Drs like Marshall, Schelling, Zamboni ... our future is not that bleak ...
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March of Dimes

Postby msrelly » Tue Apr 13, 2010 1:55 pm

I saw that documentary too and was struck by the similarities to our crusade for CCSVI.

A BIG BIG important part of the documentary though: Dr. Salk's vaccine was used before it was properly tested and actually harmed many many children. Plus, in those it was effective in, it didn't prevent the intestinal probls with Polio and these patients could still infect others.

it was Dr. Sabin's vaccine that was ultimately the successful one - and it went through more medical trials.

I would love to see a March of Dimes type approach to ALL MS research.

And yes, I love the CCSVI theory, but I've seen bee-sting and I've seen stem cell treatment and ultimately they didn't work out for us. I've agreed to accept that research has to be done. I'll be impatient about it though!!;)
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Postby msgator » Tue Apr 13, 2010 6:01 pm

the March of Dimes mission since the defeat of polio has been the prevention of birth defects and infant mortality. If we all do have congenitally malformed veins we all have birth defects and should get the March of Dimes involved in finding the cause and promoting the prevention.

I guess that is thinking way into the future.

Ann

i was a volunteer for the march of dimes for many years, and then on staff for 5 years until MS made it too hard. It would be very ironic for me if I had a birth defect all along. If there is a good reason to get them involved, I would be happy to make the initial ask.
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby Ruthless67 » Wed Apr 14, 2010 8:18 am

Hi sbr487,

We do indeed have lots to learn. I just got Jared Diamond's Pulitzer Prize winning book, Guns, Germs, and Steel from the library and am excited to start reading it. It's about the fates of human societies and should be an eye opener.
http://www.pbs.org/gunsgermssteel/about/index.html

Lora
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Postby Ruthless67 » Wed Apr 14, 2010 8:24 am

Hi msrelly,

Yes, they sort of glossed over the part about the vaccine being used in the institutions. They did state that it was Operations as Usual for research at that time in our history. No wonder we have Internal Revue Boards in place now. But the difference, as you stated is BIG, BIG in that those institutionalized men, women and yes children, didn’t have a CHOICE in the matter.
I’m glad to see today we have research trials starting where individuals can volunteer to be participants. I am indebted to those who feel they are out of “wait” or are convinced enough in the theory so far to undergo the procedure.
The doctors and researchers learn more every day about the vascular theory of MS, it is exciting to watch it unfold. I think that is why the Polio documentary made such an impression on me. If I had never been diagnosed with MS I would have missed this exciting shift in the research direction of MS and medical history because of apathy and a lack of interest.
I did have an opportunity to be tested and have congenitally malformed jugular valves, so I’m anxious to see where this research takes us. Just hope we get answers before “I run out of wait”.

Msgator,

Yes, “It has now been established beyond any doubt that CCSVI is a definite clinical entity. The uni0n of International Phlebotomists which represents 47 countries, unanimously endorsed this as a new condition at their conference in Monte Carlo in 2009. It has also been established that CCSVI is a congenital disorder and precedes the development of MS”
Isn’t that something, CONGENITAL! Yes, that means birth defect! You make a good point, wonder if the March of Dimes would be interested. Maybe you could hash some ideas around with Cheerleader on how best to approach the M of D. We could use ALL the research dollars and support for CCSVI research we can get.

Lora
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Postby Brightspot » Thu Apr 15, 2010 1:29 am

Nice posts, Lora, thanks for your well thought out and well stated perspective.
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Postby sbr487 » Thu Apr 15, 2010 4:14 am

Ruthless67 wrote:Hi sbr487,

We do indeed have lots to learn. I just got Jared Diamond's Pulitzer Prize winning book, Guns, Germs, and Steel from the library and am excited to start reading it. It's about the fates of human societies and should be an eye opener.
http://www.pbs.org/gunsgermssteel/about/index.html

Lora


Dear Lora,

Thanks for the link. When you are free, you can also read freakonomics. You will see lot of corelation with CCSVI (greed, territory protection etc pervading every aspect of profession). CCSVI has no doubt been a victim of mix of greed, ego, territory protection. People will pay for what they do, this I continue to believe ...
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Pittsburgh researchers of Ccsvi where are you?

Postby Kate_PghPA » Wed Apr 21, 2010 7:59 pm

Pittsburgh is home of many 'firsts'...

in the field of medicine, Dr Jonas Salk researched his Polio vaccine
http://en.wikipedia.org/wiki/Jonas_Salk

in the field of organ transplant, Dr Thomas Starzl and others performed
such 'radical ' transplants
http://en.wikipedia.org/wiki/Thomas_Starzl

...where are the Pioneers of the Next Step in MS surgical
treatment/Liberation ?

Seems that Georgetown U may be the closest for That Ccsvi Pioneer Physician!

Come on, UPMC !!
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