Hi all, R.E. Stanford Study, contact info, etc. IMPORTANT

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Hi all, R.E. Stanford Study, contact info, etc. IMPORTANT

Postby CureIous » Tue Jan 05, 2010 2:28 pm

Hi all, was just talking to Alex at Stanford on an unrelated matter, and mentioned about the different info getting posted, people wanting to know what is what, and when. I told her I would gladly post for her, from her lips to your ears, and only to help everyone involved.

1. Sending emails to Dr. Dake, and Angela, and Alex, is going to get (3) emails in Alex's inbox with the same info. Alex is the scheduler, organizer, list maker etc. If she has sent you The Email as posted on here before, YOU ARE ON THE LIST to be contacted later on for study purposes.
She has over 450 on the list so far, and any redundancy in that regards just takes time away from helping new people or those inquiring about the study.
2. Alex is VERY organized, and is devoted full time to making everything ready for when things kick off. She is NOT a medical professional, cannot answer specific questions on procedures, particulars on the study, etc. Her job is to get all the ducks in a row to make a seamless transition if and when an official study begins.
3. Following up 3 emails with 3 phone calls is going to ensure you get the same response 6 times over, and prevent her from tending to the matters at hand. If you have the email in your inbox, you are good to go, as far as being on the list is concerned. Obviously some aren't hyper-connected to the internet, in which case they won't read this anyways lol.
4. As stated, emails concerning the upcoming study that are written to either Dr. Dake, or Angela, will end up in her inbox regardless. Please keep that in mind.
5. Alex, and the assorted staff, are NOT involved in any way with any political wranglings that may be going on, jus sayin.
Alex is on all our sides, and loves to help people, and anything we can do to make that job easier, is going to help others in the long run.

Alex's contact email is:
ADuran@stanfordmed.org and she asked that to be posted as THE contact for the study.

Hope that helps! 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 SandyK » Wed Jan 06, 2010 6:18 pm

Hi Mark. My email came from Darcey Gibbs. She's the only person I had talked with when I was scheduling to go last year. My hopes are on her that because I did get an email about the study that I am on the list.
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Postby CureIous » Wed Jan 06, 2010 6:31 pm

SandyK wrote:Hi Mark. My email came from Darcey Gibbs. She's the only person I had talked with when I was scheduling to go last year. My hopes are on her that because I did get an email about the study that I am on the list.


Yup, you're good to go, if Darcy has it, I guarantee Alex does. Darcy helps out Alex in a backup type situation, i.e. intermittently. They work within feet of each other. Someone should post up the email, that's the one that Alex told me, "if you have that, you are ON the list". That's because she consolidated and saved every persons name in a special address book just for this, and because the response was so overwhelming, they obviously couldn't compose 450 emails one by one, so the form letter came out, they selected everyone in the addy book and there ya go! If you are in the book, you are on the list!

I know it's difficult, especially with the internet, we're so used to getting info fast and furious, and hours seem like days, and weeks are like months. Trust me I was the same way and literally had to sit on my hands, "was I in, or not, what's going on, should I call or just wait", nobody is more AR than me on that stuff lol.
This time however they have a system in place, and it's to make sure nobody slips through the cracks, and to keep things organized. Back then, it was just Alex, and only 3 days a week to catch up! She is dead set on getting things ready, so when they say "Go", she is READY!

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 jr5646 » Wed Jan 06, 2010 7:24 pm

Mark,

Thanks so much for passing along this GREAT news... I really appreciate it as I'm sure others do as well.. I have an e-mail composed in my "DRAFTS" box ready to go, asking if I'm on a list - any list - "the" list. Its been ready since I received Darceys e-mail on 12-4. I haven't sent it because I don't want to be a pain and realize they are swamped - now I can delete it. The wait is killing me for sure and I'm just trying to stay positive (hopeful) but the positive posts of others who have had the procedure are really keep me going.. seriuosly.. I have to admit this even though I don't want to, but the reports of those making progress brings me to tears, literally. I realize this may just be the emotional liability of MS, but come on... It's extremely helpful to hear the progress.. even if its placebo effect, as some suggest.

Thanks again for the heads up.. When you post things in cyberspace, you never really know if your getting thru to anybody... Just be assured that you ARE. If it weren't for people pushing, researching, posting, sharing none of this would be possible.

I hope someday that I can contribute just as you all are...

-John
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Postby prof8 » Wed Jan 06, 2010 8:27 pm

Thanks for the update Mark.

Just to reiterate what Mark stated -- I have complete faith in Alex! If you have emailed her or contacted Stanford you have not slipped through the cracks. When I was there in early Dec. I saw her desk and it was extremely organized! Waiting on something like this is hard but with the clinical trial everything has to be lined up perfectly. Just remind yourself that it will only benefit all MS patients in the long run when the results are announced/published.
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Postby ndwannabe » Wed Jan 06, 2010 8:39 pm

Thank you Mark et al for the reassurance.

I promise to sit on my hands and not try to contact Stanford over and over again :lol:

Two days since I sent an e-mail to mddake@stanford.edu
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Postby CureIous » Wed Jan 06, 2010 9:29 pm

ndwannabe wrote:Thank you Mark et al for the reassurance.

I promise to sit on my hands and not try to contact Stanford over and over again :lol:

Two days since I sent an e-mail to mddake@stanford.edu


What the heck let's start a 12 step group hahaha. Seriously I think this is a good thing though and hopefully they can secure whatever approvals, funding, protocols etc they need to get as many in as possible. I know when I went up, we talked half of the way about all the possibilities, but always ALWAYS talked about "Plan B", which was simply stated, "We went all the way up here for nothing, negative results". Even after living here for a month reading every scrap I could get my hands on, the Plan B was still plainly visible in my mind, up until the consult, after all the tests and such. Oh I aint sayin I wasn't leaning towards the CCSVI direction just a tad, of course! It was more of a "okay I'm a drag enough on the family, now I've just expended a ton of $, weeks and weeks of planning, procuring, all to come home empty handed, with a 450 mile drive to think about it all". THAT scared me more than the procedure by a long shot.

:) Better days ahead.

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 CureIous » Wed Jan 06, 2010 9:42 pm

jr5646 wrote:Mark,

It's extremely helpful to hear the progress.. even if its placebo effect, as some suggest.

-John


Hey, thanks for the reminder, forgot my placebo pills tonight! ;) ;)

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 ikulo » Wed Jan 06, 2010 11:13 pm

is more information available for the stanford study anywhere?
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Postby Johnson » Wed Jan 06, 2010 11:56 pm

CureIous wrote:
jr5646 wrote:Mark,

It's extremely helpful to hear the progress.. even if its placebo effect, as some suggest.

-John


Hey, thanks for the reminder, forgot my placebo pills tonight! ;) ;)

Mark.


Hey, can you send me some of those placebo pills? Hopefully, Codex Alimentarus has not squashed that too...
My name is not really Johnson. MSed up since 1993
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Postby CureIous » Thu Jan 07, 2010 12:24 am

Johnson wrote:
CureIous wrote:
jr5646 wrote:Mark,

It's extremely helpful to hear the progress.. even if its placebo effect, as some suggest.

-John


Hey, thanks for the reminder, forgot my placebo pills tonight! ;) ;)

Mark.


Hey, can you send me some of those placebo pills? Hopefully, Codex Alimentarus has not squashed that too...


Yeah, you can have all mine, I get along just fine without em now!

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 Johnson » Thu Jan 07, 2010 12:34 am

Thanx, Mark! I'll pass them along after I'm "done".
My name is not really Johnson. MSed up since 1993
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Postby SandyK » Thu Jan 07, 2010 1:47 am

Thanks Mark. I'm still getting my Poland stuff lined up. I don't want to shut any doors to get better.
Diagnosed 1994, Self EDSS is 6.5
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Postby kathryn6112 » Thu Jan 07, 2010 9:01 pm

Does anyone know what is involved with the study? The reason I ask is that I live in Alabama and would be happy to travel there at my own expense, but, of course, I can't stay indefinitely. I would really like to participate but I don't know if they would even consider someone so far away. Anyone else live a long way from there and "on the list"?
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Postby Sharon » Thu Jan 07, 2010 10:06 pm

Kathryn -Do not count yourself out so early. Email your contact information and a bit of your MS history. The stay is not that long - maybe 2-3 days. Right now, no one knows what the study parameters are. Some of us have a bit of "inside" information from Dake (we think :roll: ) but until that study proposal is public we do not know for proof positive. We do know there are 100's of applications -- some people who were already scheduled will be the first calls. Those that have come along in November and December and January -- who knows --- maybe a lottery? You have as good a chance as anyone in my opinion.

JR 5646 you wrote:
I have to admit this even though I don't want to, but the reports of those making progress brings me to tears, literally. I realize this may just be the emotional liability of MS, but come on... It's extremely helpful to hear the progress.. even if its placebo effect, as some suggest.


Your post brought tears to my eyes --- there are so many of you all standing on the sideline ready to be put in the game. The "stenters" that have gone before you were the practicing squad -- hopefully we are helping with the final game plan. I hope you can get on the field in the not to distant future. (hope you do not mind the sport analogy). The practice squad is trying to help you all out -- we are not going away.
Be patient

Sharon
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