DrSclafani answers some questions

[simone]

The sighting the inept sudo- attempt of germany is very worrisome as are the trials that are planned with inexperienced
docs.
IRB suppose to be caring for the patients it has been said.
Are they all neuros? and did they get paid by....? Patients having input too scary for them? Docs relating to patients scary too?

Sorry that wasn't helpful but had to.

I will also pledge $1000 for when you need it.

I ALSO THINK IT IS BETTER TO
PLEASE KEEP DOCTORS INFORMATION " PRIVATE".
& stunned :

[Cece]

We used to raise MILLIONS of dollars a year (and only had 5 months a year to raise funds) ... I'm more than convinced if we all got involved, we could have a private clinic funded, equipped, and started within 6 months. That's PRIVATE donations too ... let's not forget this is an attractive business model for many ... and funds would pour in with a proper business plan presented to the right group.

That would be amazing. Mshusband, if this is what he wants, then I'm behind you on this 100%.

[ozarkcanoer]

mshusband,

With the internet comes the opportunity of low overhead fundraising. With a volunteer fundraising staff who are computer savvy and internet savvy there is no overhead of mailings or walks or bike rides, etc etc. BNAC is letting the patients do the fundraising with the MStery parties. I had one and it was fun and raised about $4000.00 for CCSVI research at BNAC. Although our party was a real party, may MStery parties are virtual. with "virtually" no overhead, LOL. I think the CCSVI Alliance may be our best bet since it is being spearheaded by cheerleader and other Dr Dake alumni. More is coming... hope is coming.

ozarkcanoer

[girlgeek33]

I'd also like to point out that while the MS Society of Canada spends $0.48 of every $1.00 on administration and fundraising ...

the philanthropy I mentioned only spent $0.04 of every $1.00 raised on those same expenses. (and anymore raises nearly as much annually as the NMSSofC - not quite ... but still).

THAT is what charity/philanthropy IS.

Granted, SOME amount is needed for administration and fundraising because having that allows you to raise more funds ... but almost HALF? THAT'S INSANE.

IF YOU'RE NOT DOING PHILANTHROPY FOR IT BEING A GOOD CAUSE, YOU'RE DOING IT FOR THE WRONG REASONS. WHEN PHILANTHROPY BECOMES "FOR PROFIT" IS WHEN THE WORLD HAS GONE MAD.

I also volunteer to do this job for free ... because I believe in it. I'll give you 8 of my 15 no working hours a day (I need 7 to eat/sleep/do other functions) ... but it'll all be free.

Too bad those in the National MS Society won't do the same ...

Okay, perhaps we can get the Philly Art Museum, Rocky steps, idea I had up and running to be a fundraising awareness event. I posted about it a couple of months ago, with great interest. The parks dept that runs the scheduling of events on the steps never got back to me before, but I can try to stay on top of it better. I have time I can do what I can to help and I can donate $ as well.
We can use social media to spread word about our fundraising and any events we have, fitting since that is how so much of the CCSVI word has spread. Also things like craigslist, local papers, etc... When we have something to promote, I can talk to Marie at the Philly Inquirer, who interviewed me for a story, and see if she can help by writing an article...

[drsclafani]

Please do not despair, Dr. Sclafani.

Where there is a will, there is a way. And there is definitely the will. A tremendous and powerful collective will.

We will persevere, and succeed. I have no doubt that one way or another, this will work out and you will overcome this obstacle and succeed.

Please don't let this affect you personally. This can not take away from all that you have given to us and, no doubt, all that you will again. Just differently, that's all.

This WILL work out somehow, some way, I just feel it. With determined and resourceful and resolute minds behind you and with you, we'll problem-solve an even better solution to this challenge.

All of your outpouring of support in my moments of despair came in just the nick of time. I was having thoughts of quitting my jobs, resigning as chairman of radiology of the university i have contributed to for 38 years, leaving my hospital, retiring to ride my bicycle into the sunset, drinking my wine cellar empty in a month, giving up a very comfortable life style, doing some violence, screaming at all of you, hating my wife, and children and the wall street journal and mike dake and my irb, begging for new jobs, doing the mundane work that is always available without an irb, and so much more useless fantasy.

But of course i did make a committment to MSers for reasons that escape me. Those reasons were evident tonite. Sharing, compassion, loyalty, appreciation, intelligence, upbeat resistance to cruelty and selfishness.

Let me think about your words in the past five pages. Perhaps we build a center with small investors and use the profits to fund more centers and have philanthropy inside the centers to care for those who cannot afford

Let's all pursue our ideas, and discuss some crazy ideas that can lead us out of the evil empire's grasp

thank you for saving my life

[girlgeek33]

there is that hospital in lower Manhattan that closed the ER, I think St. Vincent's, that should have medical space that I'm sure they would be more than happy to rent. They left a couple of things running there, I think one was a cancer clinic.

If not, there is a big building here in NJ, would have to be converted to medical space, but a nice big building that has been empty for years. close to several major highways, rail and has plenty of hotels close by for those travelling.

[girlgeek33]

thank you for saving my life

But this is the gift you gave to so many of us, following Dr. Zamboni's lead, you and Holly, speaking to us, emailing us, creating this thread, you gave us so much, broke through so much depression!!! We were living lives that we had to accept a life held hostage in our own bodies with zero hope of ever having true hope of being free. Our hope prior to this was the hope that the meds would work and keep us from progressing. For those of us not already in wheelchairs, our greatest hope was to never need a wheelchair. For those with our sight, it was to not lose our sight. Our hope was to not need steroids or more medications to manage symptoms. You contributed to saving our lives!!!! Giving us back our lives. Freeing us from being held hostage and allowing us the freedom to heal. You give those that have not yet been liberated something to look forward to. Dreams to remember what we miss most and the idea that we will have it again! Whatever happens from here, you have given us this!!!!

Now, about that wine cellar, feel like breaking out to help ease some funds from some wealthy pockets? ;)

[Algis]

Whatever it is; count me in!

We'll find out; we are behind you Dr.

[BadCopy]

I realize that at this time we are all dreaming of private clinics in our neighborhoods............

Just think DR Sclafani, you could have a small clinic alone or with a partner where you test/treat patients and other doctors would pay to be trained to diagnose and treat CCSVI. That would help fund the clinic and keep prices low for patients that didn't have insurance or were unable to afford it.

You would be helping to treat all the MSers and at the same time training others that would go out and test/treat in other parts of the country/world. And/Or help set up small after care clinics for patients that have had the procedure.

I think you should be compensated nicely. So you would have to hit the speeking tour at a nice price. Make special visits to large hospitals and universities to help with training and research.

But until then I can give you $100 to join the other donations. This is stretching it for me. My Dad always told me to never pay for something I have not seen When I see it in writing I am sure I can come up with a couple more.

[laura383]

Even though I have only been coming to this board for about 6 weeks, your contributions to this field of CCSVI and the fact that you actually have a thread where you actually talk to real people has impressed me mightily.

You deserve our back up.

I'm in. I can't do $1000 but I can do $500.

[Rose2]

Dearest, Dearest Dr. S,
I am shocked beyond words. I cannot believe you have been denied that which is so justifiably YOURS.
I have been Liberated. Today I pushed myself a little further. I walked one mile uphill, straight. No stop. Good pace.
After 10 years in bed. Now after 8 months of Liberation I have done what I have not done in 10 years.
I want to scream it from the rooftops. I am walking, living proof.
Please let me know if I can help in any way.
YOU, My Sweet Prince, are the BEST. You have patiently been there for ALL of us. You are there at the beginning and the end of our days and the end of our days. We look for you, wait for you and rely on you. Please stay with us. We need you.
Sincerest respect and regards, Rose2

[simone]

To quote a friend's constant quote:

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." Margaret Mead

[msscooter]

Dr Sclafani,

i read all the reasons they gave for not approving your study yet. I'm so sorry for this set back. I have a few ideas to counter their arguments.

1) randomized trials are appropriate for testing drugs but not for procedures like this. Angioplasty has never undergone clinical trials ;like this. the first balloon went from the inventor's kitchen table to a patient's veins without testing on animals.

2) Double blinding and placebo controls may be needed for neurologists to accept this idea but you are an interventional radiologist and you do not need those studies to know that the patients you have seen with MS almost all have blocked veins and that you unblock veins all day long. Your area of expertise has already given you the information you need to accept the connection between blocked veins and MS- but if they need time, fine, take MS off the table, you just want to treat patients with blocked veins and all these people with blocked jugular and azygous veins, who may or may not have MS are seeking treatment to unblock their veins. what you may want to do in your study is hook up with other CCSVI IRs and compile a worldwide data base of case studies and catalogue of patient outcomes. (see DrBart) If this is your study's goal then it should be OK for patients to pay for their care.

3)Remind the naysaying neurologists that it is contrary to every academic policy of every university hospital to have doctors from one department telling doctors in another department what they can and cannot do. You can not allow this intrusion, they have a DUTY to work with you and find the truth.

4) Policy makers are prevented in govornment from delegating their independent decision making authority to private societies like the MS society, your hospital IRB board should take the same policy. the NMSS has a conflict of interest as do the neurologists, they make their living off of permanently sick patients (and drug company support for drug oriented research).. they are embarrassed by this discovery (as they should be) and they stand to loose significant research support and financial support from drug companies whose high level of serious side effects would not survive FDA scrutiny without the pleas from desperate patients eager for even the slightest relief from the hell that is MS.

5) a careful reading of the WSJ article actually shows that this is a very promising medical discovery. While the headline says Stanford study "Halted" it never says Dake was stopped by the administration. HE WAS NOT. he chose to pause while he organizes his study. He is actively pursuing this work!!! He is planning to resume treating in his double blinded placebo controlled clinical trial this year. ( Your study is different, we don't need a million of these expensive studies) Also the WSJ article sauid that the Stanford deans response to Hauser and Steinman wanting to shut down Dake was, NO, Dake's work is important and you need to join him in finding the truth. THAT IS THE TAKE HOME MESSAGE FROM THE WSJ!!!

references available on request. Go for it Dr S. WE GOT YOUR BACK!!!!

[NormB]

Dr Sclafani, I humbly ask you that you take the time for reflexion, then let's go forward boldly as the previous five pages of this thread attest to our determination and support you deserve in the least.
Count me in for a $1000.00 contribution when the need will arise.

Take care and send my best to Holly.


Norm

[drbart]

IRB suppose to be caring for the patients it has been said. Are they all neuros? and did they get paid by....? Patients having input too scary for them? Docs relating to patients scary too?

Really astonishing this IRB could be so willfully ignorant. Stuff like this adds to my conspiracy theory frame of mind - there is so much money behind the status quo, it really sounds like the fix was in from the beginning.

Dr S, you have my deepest condolences and angriest support. I have two thoughts of consolation for you:

1) That Big Insurance, which can be a natural enemy of Big Pharma, could be enlisted to help. They are shelling out an enormous amount of money for the crappy MS drugs .. and they're still pissed about co-pay coupons, where Pharma got them socked for brand-name drugs by subsidizing patient co-pays.

2) That you will someday get to choose your favorite dramatic actor to play you in the movie "The CCSVI Story".

Get some rest, have a *little* wine, and go forth tomorrow knowing you have an army at your side.