DrSclafani answers some questions

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

Postby fogdweller » Tue Jun 22, 2010 5:27 pm

arielmt wrote:I was told that the first cohort of 10 were to prove the safety of the procedure. The second cohort of 20 would have a 50% chance of actually receiving angioplasty. The other half would receive a sham procedure.



How are they going to do the "sham" procedure? I am concerned that a sham operation either will not be blinded, or will not be ethicial. I understand Stanford was concidering a "sham" operation as well. I am very curious.

This is a bit off topic although we have discussed it here. You can answer me either with pm, here, or on another thread called "how can we design a trial to test the efficacy of this procedure?" or something like that. Thanks.
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Postby pegmegrund » Tue Jun 22, 2010 5:34 pm

Dr. Sclafani,

My husband and I would be willing to invest in a CCSVI related business if you need investors, and are also willing to fundraise.

Be sure to let us know what you need.

Pam
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Postby HappyPoet » Tue Jun 22, 2010 6:09 pm

Moom9335 wrote:We need one voice to have power. Where is the CCSVI Alliance? They can legally take our money, represent the CCSVI cause and create a strong voice that cannot be silenced or ignored. All our efforts amount to nothing if it is not coordinated and united.

Even though CCSVI Alliance's website isn't up and running yet, I like to think all its members are busy working behind the scenes on our good doctor's behalf... harnessing all their brain power, making excellent use of all their contacts and connections, putting Dr. Sclafani in touch with their paid professional staff regarding expert public relations and effective grant/fund/IRB writing, and even helping with fundraisers dedicated for him. Cheerleader, do you have any ideas?

Also, two of Dr. Sclafani's Liberated patients are prominent MS bloggers -- let's see what they can do for Dr. Sclafani in this regard... start writing guys!

Dr. Sclafani, don't worry -- I'm confident you'll find your way through this maze, especially with so many helping.

:)
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Postby girlgeek33 » Tue Jun 22, 2010 6:12 pm

fogdweller wrote:
How are they going to do the "sham" procedure? I am concerned that a sham operation either will not be blinded, or will not be ethicial. I understand Stanford was concidering a "sham" operation as well. I am very curious.

This is a bit off topic although we have discussed it here. You can answer me either with pm, here, or on another thread called "how can we design a trial to test the efficacy of this procedure?" or something like that. Thanks.


I spoke to Dr Bonn at length about this as his study will also be double blind. They will do all but balloon then control patients. They will need to use more sedation on all patients so that you will not know either way. If the incomplete procedures show to be harmful, those will stop. Also if the complete procedures show to be overwhelmingly effective, they will halt the incomplete procedures. By the end, all patients with incomplete procedures will receive full procedure...
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Me too Doc S...

Postby Hope66 » Tue Jun 22, 2010 6:28 pm

I haven't had time to read through the rest of this very sad post tonight, but I will second mshusband's promise of $1,000.

If that doesn't happen, or if another fund is created again, I would be more than happy to contribute.

Dr Sclafani...I have no words to thank you enough for the time, energy and effort you have put forth for this community. May you be blessed. I hope that other Dr's will take heed of your fine example of the practice, art and science of medicine in the 21st century.

be well,
Hope

mshusband wrote:
Cece wrote:
drsclafani wrote:they have not treated any patients. they will count those cases toward a randomized prospective trial. i wonder how that will imparct results

You are right, they are totally inexperienced, and we know there's a learning curve. And it's an extremely small sample size. And it's ridiculously important to get this right and proven and they're risking mucking that up.

Dr. Sclafani, if you will get a fund set up, we can start fund-raising for you. I do not know any one person able to fund an entire site for you but I know of thousands of people who might fund small amounts that add up.


I have $1,000 for you.

I know it's not much, but I am serious ...

If you need equipment or to find a place, and what not ... I'm glad to start off the donations.
-----------
Dx March 2003
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Postby katie45 » Tue Jun 22, 2010 6:33 pm

procedures show to be overwhelmingly effective....


I wish this had applied to drug trials..it didn't...most were proved innefective or risky..and 'fast tracked' anyway...none have ever been shown ''overwhelmingly'' effective and weren't ever required to be...can u say double standard? There has to be a legal ground here somewhere...
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PLEDGE

Postby 1eye » Tue Jun 22, 2010 6:35 pm

I know you're tired of my whining, so I'LL PLEDGE $1000 TOO.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby HappyPoet » Tue Jun 22, 2010 6:42 pm

.
We pledge $1,000

~Bronic & Pam
.
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Postby katie45 » Tue Jun 22, 2010 6:48 pm

ME TOO $1000.( but reserve the right to bitch)
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Postby soapdiva884 » Tue Jun 22, 2010 6:54 pm

$1,000 here too Dr. Sclafani............this will add up and help in some way.

And Katie, I am with you, I too reserve the right to bitch too! LMAO
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Postby bmk1234 » Tue Jun 22, 2010 7:03 pm

I can't do a $1000 but I can do $100. Hopefully this lower amount will get some others to donate that can't afford the $1000.
Blaine
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Postby mshusband » Tue Jun 22, 2010 7:11 pm

I was just writing a reply, that I hope nobody felt pressured to donate $1,000 ... because that was the first number thrown out there.

I just put that number out, because it is what I COULD give ... and I think Dr. S, with all he's done educating us, it's the least I can do for him.

I was quite a skilled fund-raiser in college ("we" ran the largest student run philanthropy in the world - so you can figure out which college I went to if you google that, I was a ranking member of that group for 2 of my 4.5 college years). I'll tell you from experience, it's not the amount any one person gives ... it's the amount of people you can reach that give any amount they can ...

Whether it's $1,000 - $100 - $10 or $1 ... it all adds up, and it adds up quickly. So even if all you can give is $10 or $20 ... don't feel bad it's not $1,000 ... because it all means something in the end.

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.

If you guys want my fundraising expertise ... it's been a few years, but I have fast ideas for how to raise funds ... if Dr. S is really looking to set-up shop privately, I'm really convinced we could do it quickly.
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Postby HappyPoet » Tue Jun 22, 2010 7:16 pm

This is the genesis of an Internet telethon.
I nominate Holly and Cece to manage the funds.
Keep the pledges coming!
:)
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Postby HappyPoet » Tue Jun 22, 2010 7:21 pm

.
mshusband, I nominate you to be Fundraing Czar.
:)
.
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Postby mshusband » Tue Jun 22, 2010 7:28 pm

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 ...
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