CCSVI - Aussie Action!

mazza · Post by **mazza** » Fri May 21, 2010 6:41 pm

Amazing progress Kerrie and in a short time. Thanks for all you have done.

kezzcass · Post by **kezzcass** » Sun May 23, 2010 3:28 am

Hi Everyone,

I know I have already mentioned this above, but I am really searching for help at the CCSVI tent at the Sydney Walk on 6th June. We have pamphlets, which describe what CCSVI is, where people can be tested and treated & various links for more info. (Bill Younger has seen them and ok'd them - I pesonally think they are very good). But most importantly it would be great to have people available to answer questions. So for anyone in Sydney (whether you have had the procedure or not) I am asking that you volunteer to spend some time at the stand (you don't need to register for the walk).

If you can help out please PM asap.

Thanks in anticipation, Kerri

hwebb · Post by **hwebb** » Sun May 23, 2010 6:48 pm

just having a go at joining up to the "CCSVI team" which is participating in the MS Walk, and gathering donations to support ccsvi testing. The registration process seems to require you to sign up for the walk itself - am I doing this right? I'd prefer to just donate to CCSVI cause (by joining the team?) and man a table if possible. I'll only register for the walk (with entrance fee) if I have to. I wantt o maximize the donation dough which goes to CCSVI.

helen

hwebb · Post by **hwebb** » Sun May 23, 2010 7:04 pm

hmm - looks like I should have just clicked "donate"...rather than "join" the team. Anyhoo - donated now.

Sorry about my last post - can I blame it on brain fog?

Downunder · Post by **Downunder** » Mon May 24, 2010 6:27 pm

I tried to join the team too, but as it requires an entrance fee, I just donated instead. I will be there on 6th in Melbourne to man the tent and talk to people.

So don't forget to post the donations site to ALL your friends:

http://register.mswalk.org.au/MS-Walk-a ... +Australia

especially as we now know ALL our donations will go to CCSVI research. (yay for Kerri!!).

nico · Post by **nico** » Mon May 24, 2010 10:17 pm

howdy all,

donated to the MS Soc/CCSVI team 3 days ago but got a standard 'thanks for yr donation, these funds will go towards essential services for people living with MS' or some such. huh? l queried it but no response. And yes, l definitely clicked on the CCSVI button.

has anyone else found the same?

cheers, nico

kezzcass · Post by **kezzcass** » Tue May 25, 2010 1:34 am

Hi Nico,

You may need to call MS Australia to ask them to move it - what a pain! The number is 1800 287 367 (if you donated to Melbourne team). Kerri

hwebb · Post by **hwebb** » Tue May 25, 2010 3:47 am

Hey Nico,
sounds like you got the generic "receipt" message. If your funds did go to the CCSVI Australia group...your name will be listed as a sponsor. You should check it out online:

http://register.mswalk.org.au/MS-Walk-a ... +Australia

Nean · Post by **Nean** » Tue May 25, 2010 6:21 am

Hi Everyone

Fantastic news that CCSVI is being taken seriously and congrats to Keri for all her never ending input and organizing. It's wonderful that local fundraising has begun and that the procedure has made such a difference so many people.

I saw the Prof last week. The post procedure Doppler is confusing as some readings were better and some were worse and there is still "reflux". However I have not had any improvement from my own point of view and according to the questionaire analyses. At this stage it seems there is no point in repeating the procedure.
However with so many people reporting improvements, there seems little doubt that CCSVI is part of the MS picture.

Keep up the good work.

Nean

nico · Post by **nico** » Tue May 25, 2010 3:12 pm

thankyou kerri and helen,

MS Soc chased - they are investigating. thank you for your feedback.

cheers, nico

Downunder · Post by **Downunder** » Tue May 25, 2010 4:44 pm

I suspect that as 'CCSVI Australia' is a 'team' then there will be a generic thank you, but we will know the total raised under our banner and so Bill will be able to put that total in trust under CCSVI.

nico · Post by **nico** » Tue May 25, 2010 10:43 pm

all fixed - here's hoping all CCSVI donations go to the right place!

cheers, thanks for the info, Vegemites!

cheers, nico

Val1964 · Post by **Val1964** » Tue May 25, 2010 11:30 pm

Good job. Nico

kats · Post by **kats** » Wed May 26, 2010 3:01 am

Great work Everyone!

Just to let you all know Saw Prof T today.

My sons veins have restenosed again according to the doppler test done by Julie. He originally did notice very little improvements for a frew days and that was it. Seeing he noticed some slight improvements it is worth having an MRV to see if the veins are narrowed again. If the MRV shows the narrowing then he will have another venogram.
shall keep you posted.
Hope to meet a lot of you at the MS Walk in Melb.
My Best Regards to all readers.
Kats

kezzcass · Post by **kezzcass** » Fri May 28, 2010 6:02 pm

** BREAKING NEWS **

The Sunday Night Program will be airing a story on CCSVI on Sunday 6th June @ 6.30pm. I can tell you about it now as some Italians posted that Rahnee Sadler had interviewed Zamboni's colleague in Italy - with pictures - on the Australian - CCSVI Facebook group!! Check it out.

I spoke with the producer this morning and whilst disappointed it was leaked a few days too early (before the official promos start on Monday) at least it gives us time to let people know and have as many MSers and their families poised to watch.

It is a thorough investigation which has taken 3 months to put together - I think we will all be pleasantly thrilled at what we see ;)

The story will be posted on the link below, as well I am doing a blog where people can make comments and have discussion after the story airs.

http://au.tv.yahoo.com/sunday-night/

Thank goodness that secret is out - now I can sleep again! Kerri x

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