This Is MS Multiple Sclerosis Community: Knowledge & Support

Tuesday, March 29, 2011 6:30-9:00pm
Hyatt Regency, Chicago

CCSVI Alliance presents an Educational Symposium
Dr. Michael Dake--moderator with a panel of eight experts
Further details to follow--

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

You can register here: http://tinyurl.com/63d5vwq
Quite a line-up!

Here's the official invitation---

Hope lots of Chicago area people can make it. The event is free of charge, and will be very enlightening.

link to invitation

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

My husband and I are coming !!! We are taking the train from St Louis to Chicago. I will be having my second CCSVI procedure on March 16th in Baltimore and my IR, Dr Ziv Haskal, will be part of the roundtable. I hope to meet some of my online friends in Chicago too !!! Thanks CCSVI Alliance for hosting and planning this event.

ozarkcanoer

So glad you are coming, OC! It will be a terrific event--
CCSVI Alliance is working hard to keep the doctors talking, the studies coming, and the progress continuing.

The Tampa event was a huge success--lots of new doctors (neurologists and vascular) learned about CCSVI from the original investigators, and are now going ahead with their own studies. And the patients got to meet each other and spend a wonderful weekend together.

This is truly a grassroots effort. We're thankful for all the support.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

UPDATE: The CCSVI Alliance Roundtable Discussion on March 29th 6:30-9pm in Chicago will include panelist,
Dr. Avertano Noronha, Associate Professor of Neurology at the University of Chicago



To RSVP for this free educational event---

link to invite

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Last night was great. Thank you to all that organized it and all the doctors that came and talked. It was great to see and meet all of you and to hear first hand about the procedure and all of the info that was shared.

It was also wonderful to meet and talk to some of the many people that came who had already had the procedure. We were able to connect to hear their stories and it was in person....not cyberspace

My husband can't wait to have the procedure done. The doctors did make the point that things are changing day by day and how they treat CCSVI now is not how they will be doing it in a year. They are all learning at such a great pace and they said that perhaps for some people, it might be beneficial to keep watching from the sidelines and wait a bit before having it done. But when you talked to the people that had already had it...it made you want to schedule it right away!

The doctors also mentioned how hard it is to get funding for the trials they would like to do. MS Society isn't too gung-ho on it, drug companies have no interest either. So if anyone knows any multi-millionaires with MS or a MS connection and generous heart... send them to these doctors! It would move things even faster.

Definately well worth it! .......... but paying $50 to park was a bit painful!

Life---thanks for posting. The Alliance was really sorry about the parking fee...that was simply highway robbery on the part of the hotel! But so glad that you got to meet Sharon and Debby from the Alliance and hear those wonderful doctors speak for free... I'll pass on your comment to the Alliance board...
Best of luck as you continue in your own search for answers for your husband. I'm with you on that,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

From the 36th Annual Scientific Meeting in Chicago, Ill:
Interventional Radiologists Advance MS Research: Vein-opening
Treatment Safe
http://www.sirweb.org/news/newsPDF/3_MS_final.pdf
Quote from the press release:
SIR stresses the importance for MS patients to continue an ongoing dialogue with their neurologists to discuss their treatment care. unquote
This is all very nice but what if the dialogue is cut off by the neurologist? what if you can not find a neurologist in your country who is open to discuss?
This shows the huge systemic problem, it's a problem of cultural preparation.
Governments should help here, not to solve the medical issues as such, but to facilitate a truly multidisciplinary collaboration, to avoid that energies are spent on abstruse debates of identity and status, to ensure the interests of the patients prevail at all times.
Incidently, this should involve the endocrinologists/micro-cellular specialists as well. see http://www.thisisms.com/ftopict-15188.html

The Alliance has taped this round table conference, and it is currently being edited for future hosting on our site, www.ccsvi.org

Many new relationships were forged, many interested doctors (including neurologists) attended and were intrigued and excited by the scientific discussion. Thousands of IRs heard discussion and presentation of CCSVI angioplasty as a potential treatment for MS symptoms at the SIR conference, where CCSVI Alliance hosted a table---there will be many more conferences and discussions in the US and around the world in the next year. Dr. Zamboni is in Australia this week.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Being from this area, I am ashamed to say the high parking rates aren't just the hotels, it's the City of Chicago. Parking fees and taxes are outrageous.