CCSVI Worldwide Victory website

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

CCSVI Worldwide Victory website

Postby Vonna » Fri Feb 05, 2010 5:25 pm

Hello TIMS,
I have been trying to read every post possible, as this subject is so fascinating. I see new doctors popping up here and there willing to either prescribe testing, test, or even do the actual surgery. I also see people from all over the globe wanting information specific to their area. I get this sense that everyone here wants to do all they can, and we are having to "hurry up and wait".

I'm trying to keep up with all the medical personnel and keeping my eyes open for one even remotely near me. I feel that as this list gets longer, it will be harder to keep up with.

I have been working tirelessly on a way to get these medical personnel listed in an orderly manner that is easily viewable at a glance.

Please take a look at this website and give it your consideration.

http://ccsvivictory.club.officelive.com ... onnel.aspx

I realize it's not very useful as is, but I need input!

Also, please check out the translate tab and click on a language other than English.

Let me know how it works for you. This would be most helpful.

http://ccsvivictory.club.officelive.com/Translate.aspx

P.S. I realize a lot of the information on the site is repeat information. I am just looking for a way to group everyone's efforts and build a larger CCSVI presence. I want to help the cause by listing links to other sites, not take away from what everyone is doing. Hope you see this for what my true intentions are.

Thanks in advance!

Vonna
User avatar
Vonna
Family Elder
 
Posts: 170
Joined: Mon Jan 04, 2010 4:00 pm

Advertisement

Postby jimmylegs » Fri Feb 05, 2010 5:44 pm

vonna that is exactly what is needed, excellent work.
jimmylegs
Volunteer Moderator
 
Posts: 9025
Joined: Sat Mar 11, 2006 4:00 pm

Re: CCSVI Worldwide Victory website

Postby happy_canuck » Fri Feb 05, 2010 6:24 pm

Vonna wrote:Let me know how it works for you. This would be most helpful.

http://ccsvivictory.club.officelive.com/Translate.aspx


Hi Vonna,

Would you link under Canada to the CCSVI at UBC MS Clinic Facebook page:
http://www.facebook.com/pages/Victoria- ... 0?ref=mf#!!

We are following the UBC study closely and just submitted a joint Facebook/UBC proposal for funding CCSVI research to a major corporation.

Cheers,

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
User avatar
happy_canuck
Family Elder
 
Posts: 267
Joined: Sat Nov 28, 2009 4:00 pm
Location: Victoria, BC Canada

Postby Vonna » Fri Feb 05, 2010 7:00 pm

I appreciate your comment jimmylegs,
You being an elder, it means a lot.

happy_canuck,
It's done! Please check it to see if I added info. correctly.

If there is anything else, I'll be happy to add it.

I noticed a fundraising video and would like to add it. You see, I'll have to go research exactly who posted it, from what country, why exactly they are raising funds... Help with this info. would be great. You don't have to help with this particular subject, just to give everyone an idea.

If you want me to post something, just give as much detail as possible, I'll be glad to do it.

Vonna
User avatar
Vonna
Family Elder
 
Posts: 170
Joined: Mon Jan 04, 2010 4:00 pm

Postby Johnson » Fri Feb 05, 2010 11:15 pm

Vonna,

Your efforts are much appreciated!
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby eve » Sat Feb 06, 2010 12:39 am

Hi Vonna, that looks great! Thank you so much for your effort. I see you need admins - I would not mind helping you out when I can?

Also two links for The Netherlands:

http://www.ccsvi.nl/
http://www.msweb.nl/forum/


Also I checked some of the Dutch translations - it is not too bad, if I have some time I will 'contribute a better translation' hopefully this weekend.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
User avatar
eve
Family Elder
 
Posts: 117
Joined: Tue Jan 05, 2010 4:00 pm
Location: Netherlands

your new website

Postby msscooter » Sat Feb 06, 2010 12:35 pm

Vonna this is excellent. I think you keep your credibility by not soliciting funds but directing donations. Other MS centers will follow the $$$.

Why don't you add links to the Georgetown study and the Stanford study as well as the CCSVI-Uk and Joan & Marie's CCSVI facebook group. Anyone know of any other clinical trials on CCSVI?
User avatar
msscooter
Family Member
 
Posts: 77
Joined: Fri Jan 08, 2010 4:00 pm

Postby Vonna » Sat Feb 06, 2010 6:29 pm

Johnson,
Thank you for your kind comment. I just want to see this move along like the rest of you.

eve, I have added your links, and I truly appreciate you being willing to help. Awesome! I have sent you a PM concerning this.

As I read somewhere today, we may be a fatigued bunch, but when it comes to our health, we're...

handi-capable!

Msscooter, thanks for the input. I will be glad to add the links. It's just that there's a lot to do.

I would love all the suggestions I can get, and please consider giving links and detailed information as well. This will make things go faster.

The sky is the limit on this website, I've got so many ideas already. Would love to hear yours, and if you have an idea you would like to pursue personally, I can give you a password to edit the site.

This is not "my" site. I want it to become all of ours.

Lavonna
User avatar
Vonna
Family Elder
 
Posts: 170
Joined: Mon Jan 04, 2010 4:00 pm

Postby SandyK » Sat Feb 06, 2010 9:00 pm

I will help wherever I'm needed. Doing this as a one man show is not getting me anywhere.
Diagnosed 1994, Self EDSS is 6.5
User avatar
SandyK
Family Elder
 
Posts: 221
Joined: Wed Oct 14, 2009 3:00 pm
Location: WA

Postby Vonna » Sat Feb 06, 2010 9:39 pm

Awesome Sandy!

I will send you a PM. I'll get working on it right now.

It will have passwords to allow you into the site to add and edit.

Thanks so much,

Lavonna
User avatar
Vonna
Family Elder
 
Posts: 170
Joined: Mon Jan 04, 2010 4:00 pm

Postby eve » Sat Feb 06, 2010 10:18 pm

I just had my first look around, it all looks great, clear instructions, very doable, thanx Vonna! You are def. handi-capable. :lol:
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
User avatar
eve
Family Elder
 
Posts: 117
Joined: Tue Jan 05, 2010 4:00 pm
Location: Netherlands

Postby sbr487 » Sat Feb 06, 2010 10:19 pm

Vonna and other elders,

This might be a bit off topic. I think we should also try to create sticky that lists chronology of events in CCSVI (starting from Dr.Z to Buffalo newletter).
Some stickies are close but dont fit the title ...
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby Vonna » Sun Feb 07, 2010 12:08 am

Yes, I am very interested in having a complete time line, even starting with the early research from the 1930's.

I think it would be good to have this in chronological order.
An overview, with links to full article's maybe.
Giving credit also to people like Joan, CVT news, etc...
User avatar
Vonna
Family Elder
 
Posts: 170
Joined: Mon Jan 04, 2010 4:00 pm

links to CCSVI info

Postby msscooter » Sun Feb 07, 2010 12:09 pm

Hi Vonna, I just found this page;
http://www.direct-ms.org/CCSVI.html

It may be helpful, it seems quite extensive, and I am assuming they are happy to share.
User avatar
msscooter
Family Member
 
Posts: 77
Joined: Fri Jan 08, 2010 4:00 pm

Postby Vonna » Sun Feb 07, 2010 12:28 pm

Yes, I do have this page listed already. It is a very good one.

I haven't forgotten about your other suggestions. Every time I go looking for the information on them, I get sidetracked! I typed in "Georgetown study" in the search bar, and got lots of useful information. However, what I really need are to the point specifics. I know I should have this info. readily at hand, but as I said, the information is getting more and more widespread.

It would be most helpful if you could send direct links for me, and a little information as to what I am linking to. This will insure that I comply with your request in a timely manner! :D

Thanks again,
Vonna
User avatar
Vonna
Family Elder
 
Posts: 170
Joined: Mon Jan 04, 2010 4:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service