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Author Message
  Topic: CCSVI Alliance
Sharon

Replies: 38
Views: 1897
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Mon Jul 26, 2010 10:02 pm   Subject: CCSVI Alliance
A special posting to recognize the Patient Advisory Board ( PAB) of the CCSVI Alliance

The PAB is a group of dedicated, awesome people who have volunteered their time to the Alliance. Each one has ...
  Topic: CCSVI Alliance
Sharon

Replies: 38
Views: 1897
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Mon Jul 26, 2010 4:00 pm   Subject: CCSVI Alliance
To Everyone,

I just had to take a moment to say THANK YOU! We appreciate all your comments, and your feedback on the website. Please, if you find anything which you think can be improved, let us ...
  Topic: My ignite Boulder speech about the Liberation Procedure
Sharon

Replies: 34
Views: 1295
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Tue Jul 13, 2010 4:32 pm   Subject: My ignite Boulder speech about the Liberation Procedure
Ceci -

Wonderful video -- it is so refreshing. Thank you for taking the time and energy to tell your story in such a heartwarming presentation.

Check your PM's - I live just down the highway fr ...
  Topic: CCSVI Alliance update
Sharon

Replies: 14
Views: 836
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Thu Jun 24, 2010 11:20 am   Subject: CCSVI Alliance update
HP -

In answer to your question, as Cheer wrote:

We will be providing links on our site to IRB approved studies, so that donors can give their money directly.



Sharon
  Topic: CCSVI Alliance update
Sharon

Replies: 14
Views: 836
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Wed Jun 23, 2010 4:12 pm   Subject: CCSVI Alliance update
Now is a good time to update everyone on the progress we are making at CCSVI Alliance. While currently all-volunteer, CCSVI Alliance is building a professional, nonprofit organization to help patients ...
  Topic: Zombie Science
Sharon

Replies: 31
Views: 2392
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Mon Jun 21, 2010 2:18 pm   Subject: Zombie Science
Not Zombie science, but interesting......
The July/August Discover magazine has an article titled"The Streetlight Effect"
The fundamental error here is summed up in an old joke scientists ...
  Topic: Notes from CureIous' at Stanford
Sharon

Replies: 233
Views: 22089
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Tue Jun 15, 2010 4:36 pm   Subject: Notes from CureIous' at Stanford
Hey Mark -

STABLE!!! No drugs. What a wonderful report.

Enjoy the summer with those three cute kids.

Sharon
  Topic: Cervical Reason for CCSVI
Sharon

Replies: 26
Views: 2276
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Mon May 24, 2010 8:18 am   Subject: Cervical Reason for CCSVI
Notadoc - check your PM's

Sharon
  Topic: Cervical Reason for CCSVI
Sharon

Replies: 26
Views: 2276
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Sun May 23, 2010 8:09 am   Subject: Cervical Reason for CCSVI
Zap -

I am close to Boulder so I will give Dr. Elster a call. Even though I have been treated by Dr. Dake, I would like to connect with her. I will get her and my chiropractor together - he treat ...
  Topic: RE:CCSVI PROCEDURE IN SYDNEY
Sharon

Replies: 8
Views: 538
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Sun May 23, 2010 8:00 am   Subject: RE:CCSVI PROCEDURE IN SYDNEY
Seeva -

Congtratulations! It sounds like you had a successful treatment with a positive outcome. It is always good news to here of the immediate improvements. Did you add your story to the tracki ...
  Topic: Hi from Jeff, re. my stent treatment at Stanford
Sharon

Replies: 235
Views: 25537
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Thu May 13, 2010 8:21 am   Subject: Hi from Jeff, re. my stent treatment at Stanford
Congrats to you and Jeff and to Dr. Dake!

No new lesions - what wonderful news. And, no enhancement - I can't remember, but didn't Jeff have enhanced lesions on his pre-op MRI? If he did, and now ...
  Topic: First time seeing neuro since treatment
Sharon

Replies: 23
Views: 1762
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Sat Apr 24, 2010 3:03 pm   Subject: First time seeing neuro since treatment
Rhonda -

What a great story! Not only about you and your high heels, (whoo, hoo!) but about your doctor and the fact that he is actually able to say the letters CCSVI. If we go back to your posts ...
  Topic: Notes from CureIous' at Stanford
Sharon

Replies: 233
Views: 22089
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Thu Apr 22, 2010 3:44 pm   Subject: Notes from CureIous' at Stanford
Hey, Mark!

What an interesting follow-up report. You are so thorough at telling the little bits and pieces -- all of it is fascinating.

The BCV issues is fascinating to me because one of my st ...
  Topic: Today is a reward, 5 1/2 months post surgery
Sharon

Replies: 41
Views: 2813
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Tue Apr 06, 2010 1:44 pm   Subject: Today is a reward, 5 1/2 months post surgery
Rhonda - you go girl!! What a wonderful story!
  Topic: NMSS CCSVI webcast Apr14; Drs. Zamboni & Zivadinov atten
Sharon

Replies: 3
Views: 608
 PostForum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)   Posted: Tue Apr 06, 2010 1:35 pm   Subject: NMSS CCSVI webcast Apr14; Drs. Zamboni & Zivadinov atten
Thanks for posting Sandra -

Get registered for the webinar - then go to the NMSS Facebook site and post questions for possible inclusion into the event.
 
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