DrSclafani answers some questions

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

Postby ForCCSVI » Wed Jun 23, 2010 9:24 am

First they ignore you,
Then they laugh at you,
Then they fight you [and they sure are doing that]
Then you win
-Ghandi
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Postby newlywed4ever » Wed Jun 23, 2010 9:27 am

I spent the night with the mantra WTF going thru my head; I can only imagine how you feel, Dr S. I pledge $1000 thru my own fundraising. Can private clinics have shareholders? Any attorneys on this board to explain how best to start a clinic and how to accept donations? I cannot see you, our hero, working under someone else - after all, you may very well be the most knowledgeable doc in the U.S. Is it possible to be a contracted vascular surgeon with many hospitals/clinics - are you willing to travel all over? Can a group of vascular surgeons and/or IRs have more power than an individual if they joined the band wagon? Can Zamboni/Dake/McDonald present to your IRB or is it truly a dead end with the IRB? Your IRB did a minimum of research - I even wonder if they did a Google search using the words "ccsvi negative". If even one of the IRB members were to read this thread, I believe the outcome would be different. Again, WTF?!?!?! (I have to go thru the stages of grief and I'm hung up on anger right now)
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Postby JCB » Wed Jun 23, 2010 9:45 am

I don't think raising funds will be a problem with this group. We just need to get organized. What is the link between Dr. Sclafani and Cheers new group? I am sure most of us have raised money for the MS Society so we are already good at getting people to give. Let's get organized! Maybe Cheers new group will do just that. Let's help Dr. S in whatever he needs to get going. You can count me in for $1,000+. I'm ready to start a Bike CCSVI ride (my right leg goes along for a free ride, and I pay for it for a few days). It's worth it, if together we can fight this beast we know as MS.
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Postby HappyPoet » Wed Jun 23, 2010 9:46 am

Good news, perhaps?

cheerleader posted this about an hour ago on her Facebook page:
cheerleader wrote:Dr. Sclafani will find a private location to treat and he will continue. There will be more information in the coming days.

What I don't understand is why cheerleader hasn't posted here on Dr. Sclafani's thread.
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Postby dlb » Wed Jun 23, 2010 10:07 am

drsclafani wrote:I HAVE NOT RECEIVED THE OFFICIAL REJECTION

Okay... this is positive news #1. I can hang to that for a bit.

drsclafani wrote:
1. AN OBSCURE GERMAN ABSTRACT REPORTING TEN PATIENTS THAT SHOWED NO ASSOCIATION BETWEEN CCSVI AND MS


The thing that has bothered me mostly about this study is that there is a real possibility that they aren't testing in a correct way... remember all the false negatives at False Creek until they got up help from Dr. Simka? Is the IRB group even considering that distinct probability? Even BNAC has recognized that they have likely missed some abnormalities & have adjusted their testing procedures as I understand....

drsclafani wrote:
4. THAT THE NATIONAL MS SOCIETY RECOMMENDED AGAINST TREATMENTS


grrrrrrr....

drsclafani wrote:SORRY FOLKS, I AM REELING

I AM LOST RIGHT NOW.



I too, am sorry, lost & reeling. Don't know where I stand on your list, but I'm waiting for the man that has reached out to us . There comes much trust & faith in such a person.

drsclafani wrote:

I AM SPEAKING TO OTHERS WHO DO THE PROCEDURE TO SEE IF I CAN DO MY PATIENTS AT THEIR SITE.

I AM LOOKING FOR SOMEWHERE ELSE TO TREAT MY PATIENTS.

ANYBODY KNOW OF ANYONE INTERESTED IN INVESTING IN A PROCEDURE SITE?



Great.... positive news #2. You will find a place & we will come!

drsclafani wrote:
SORRY TO ALL OF YOU. I AM SO UPSET :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry:


It wrenches my heart when you say you are sorry - you have no reason to apologize. I expect we all know that you are doing everything you can - your dedication to us & your commitment to forage ahead is proof. Take care....
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Postby mshusband » Wed Jun 23, 2010 10:07 am

Moderating the speed of that Facebook thread takes a lot of time ... more than moderating the few hundred users here, she has 15,000 there.

I'm glad someone brought it over here though.
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Postby KikiT » Wed Jun 23, 2010 10:34 am

Dr.S, being the hospital is big on serving the community , surely the hospital and community need funds. ..Can it be presented as an income maker. Patients need hotels, food, parking, transportation... The procedure will be payed by insurance and an additional co-pay can be added for hospitals role in tracking stats for study.( The co-pay for those who cannot afford, can be from donations)..
Brooklyn can become a Center for CCSVI treatment as have become Poland and Albany. The board understands $$...we must think of what will turn them around. Maybe we can pit the Board of Directors agst. IRB?
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Postby KikiT » Wed Jun 23, 2010 10:35 am

Dr.S, being the hospital is big on serving the community , surely the hospital and community need funds. ..Can it be presented as an income maker. Patients need hotels, food, parking, transportation... The procedure will be payed by insurance and an additional co-pay can be added for hospitals role in tracking stats for study.( The co-pay for those who cannot afford, can be from donations)..
Brooklyn can become a Center for CCSVI treatment as have become Poland and Albany. The board understands $$...we must think of what will turn them around. Maybe we can pit the Board of Directors agst. IRB?
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Postby Zeureka » Wed Jun 23, 2010 10:39 am

Oooh nooooooooooo! I'm speechless...Only saw the news on Dr Sclafani's blockage now and also apologise for being German on those limited studies :((((( and what absurd request to put limitations on placebo-controlled trials.

Prof Schelling had expressed around a month ago that Neurologists would be trying to block every further non-placebo controlled research and requesting first research to be completed on this basis before letting researchers move on with more, that this could happen...but I maybe did not want to believe it:(

So sorry Dr Sclafani - really missing the words for this...But what speed of answers/news and ideas spreading on same day that gives hope a solution will be found to support Dr Sclafani can continue his research! Thank you all so much for your commitment!
Last edited by Zeureka on Wed Jun 23, 2010 3:54 pm, edited 2 times in total.
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Postby HappyPoet » Wed Jun 23, 2010 11:24 am

Hi mshusband,

I feel I have no choice but to delete my previous comments about cheer's facebook page... please PM me for details, thank you!

Kindest regards,
~HappyPoet
Last edited by HappyPoet on Fri Jun 25, 2010 8:55 am, edited 2 times in total.
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Postby mshusband » Wed Jun 23, 2010 11:59 am

That's also why we don't see the likes of a few people on here post over there ... because they can't hide behind screen names and fake user IDs ...

not that I'd accuse anyone here of doing that. But I'd love to see who the anti-CCSVIers on here really are in person ... on Facebook.
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Postby nono » Wed Jun 23, 2010 12:41 pm

OH dearest dr. Sclafani ,

I'm so angry about all this , I cant express in words.
I've talked about you on the Dutch forum and some people suggested that maybe you can contact some private clinics in Germany who are doing diagnose and treatment.
Those clinics offer treatment for (mostly) Dutch MS patients. Just across the Dutch borders because the regulation and law in Holland doesn't allow treatment.
Maybe its of any help to you to speak with them , they know how to start a private clinic and about Law and so on.
So here are the addresses :
Privat scan : http://www.ccsvi-online.nl/
Prescan:http://www.prescan.nl/

Thanks for all your efforts ,
Nono
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Postby Lyon » Wed Jun 23, 2010 1:02 pm

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Last edited by Lyon on Sun Nov 20, 2011 8:16 pm, edited 1 time in total.
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Postby Cece » Wed Jun 23, 2010 1:04 pm

I am looking up how to donate, here is what seems relevant right now:

A. Accept Pledges For Later Collection From People Who Give You Contact Information Online

This method can be implemented most easily, using one of the various CGI scripts that will forward a Web form's data as email to a designated address. No confidential financial information (such as credit card numbers) is transmitted online. The donor can follow-up by mailing a check (possibly after you send a reminder), else the charity must contact the person to collect check or credit card information by phone.
http://www.idealist.org/if/idealist/en/FAQ/QuestionViewer/default?section=16&item=23

So how about we email:

1) the amount of our pledge
2) our name and contact info (address, email, phone number)
and
3) our undying love :)

to (edited out), at:
(edited out)

With the subject header: MY PLEDGE FOR DR SCLAFANI'S CCSVI RESEARCH

Or would that overwhelm her with emails? Is there anyone else who could set up an email and be trusted to collect pledge information and create a database of the names and addresses?
Last edited by Cece on Thu Jun 24, 2010 12:16 pm, edited 1 time in total.
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Postby girlgeek33 » Wed Jun 23, 2010 1:27 pm

Cece wrote:So how about we email:


to Holly Barr, Dr. Sclafani's tireless assistant, at:
ccsviliberation@gmail.com

With the subject header: MY PLEDGE FOR DR SCLAFANI'S CCSVI RESEARCH

Or would that overwhelm her with emails? Is there anyone else who could set up an email and be trusted to collect pledge information and create a database of the names and addresses for future follow-through?


I think we shouldn't overload Holly. We can come up with something. I know we will all eagerly contribute $$$ when the time comes. Lets organize first and set up a way to collect all. I seem to recall that the CCSVI Alliance was going to raise funds for specific reasons. Perhaps, since they already have non profit status, a separate fund can be directed to be specifically for Dr Sclafani getting a treatment facility. Kind of like with the red cross, you can specifically state you want funds to go to Haiti or tsunami or hurricane or tornado victims. I know the CCSVI Alliance is just getting started but perhaps something to consider. Then when people donate it can be to general fundraising or Dr Sclafani or Dr Dake or BNAC, etc....
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