CCSVI Presentation for Lay People

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

Thanks

Postby fiddler » Sat Jul 10, 2010 7:47 pm

Thanks, mate! How did the CCSVI walk in June go? Sounds like the MS Society of Oz is (at least sort) getting on the band wagon - good on ya!
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Downunder » Sat Jul 10, 2010 8:18 pm

The walk went well.
We were given tent space by the CEO of MSS Vic/NSW/ACT (eastern seaboard), we had our leaflets and blue balloons!! stood out like a dream!! We raised approx. $20,800 and also are being given $5,500 from the overall fund.
We've been promised by the CEO that all of those funds will go into a separate account for CCSVI research.
The CEO has been extremely supportive, unlike the Western states of Oz. He has even put out the CCSVI leaflets at the MS Centre in Victoria.

Good luck with your talk. Keep it simple, most people will only take in 50% at best. Personal anecdotes and a leaflet would be great.
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useful carrot

Postby hwebb » Sat Jul 10, 2010 9:51 pm

you know ...the balloons really drew people in. It was a real family day...and everyone wanted a balloon for their kids. It was a useful carrot.
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Postby bretzke » Sun Jul 11, 2010 5:59 am

Ted-

Some thoughts after reviewing the slide show.

You have 20-30 minutes for your presentation including Q&A. Your slide show has 15 slides. That's two minutes per slide. Ain't gonna happen. Reduce number of slides.

Majority of slides have too many bullet points and too much text. Your audience will be fighting to read all the info on the slides and listening to you at the same time. Try to keep bullet points at three per slide. Reduce text and add relevant photos. Example: On the slide where you discuss Poland, add a photo of the hospital.

Show some video! A video adds tremendously to a live presentation. A short clip showing a venoplasty with narrowed vein, balloon inflation and improved flow is worth a thousand words.

A before and after video of another patient's liberation improvement will set up your personal experiences. Big drama in that.

Compress, compress, compress.

Brian
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Thanks

Postby fiddler » Sun Jul 11, 2010 6:13 am

Thanks, Brian, but one clarification: the 20-30 minute time limit (that I set myself) was for the presentation, not presentation plus Q&A. I've figured that we would end up with another half hour of Q&A, but that will really depend on the audience.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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By the way...

Postby fiddler » Sun Jul 11, 2010 6:17 am

Brian, if you can point me to a good, quick video of the venopgraphy of the procedure, I'll see if I can fit it in. And maybe a good quick video of before and after: I haven't been looking at those lately - do you have a favourite?
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby bretzke » Sun Jul 11, 2010 7:42 am

Ted-

I think Denise has some compelling before and after videos.

Before procedure walking: http://www.youtube.com/watch?v=JO3DnqHJfeM
Before procedure stepping and balance: http://www.youtube.com/watch?v=lvwCuPXrKgI&feature=related

24 hours after liberation procedure: http://www.youtube.com/watch?v=KYNhYtVojSQ&feature=fvw

I can jump!: http://www.youtube.com/watch?v=eNQnMsXxUg4&feature=related

Brian
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Postby bretzke » Sun Jul 11, 2010 7:55 am

Ted-

This procedure video runs long, but you could do a "talk-over" while it's playing:

http://www.youtube.com/watch?v=vZpIbpPAJGE

Brian
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Good ones, but...

Postby fiddler » Sun Jul 11, 2010 7:57 am

Those could be good, Brian, but how do you a) download the videos (not sure I'll have internet at the presentation site) and then edit them (or at least the longer one) so that we can focus on the stepping comparison.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Re: Good ones, but...

Postby bretzke » Sun Jul 11, 2010 8:14 am

fiddler wrote:Those could be good, Brian, but how do you a) download the videos (not sure I'll have internet at the presentation site) and then edit them (or at least the longer one) so that we can focus on the stepping comparison.
...Ted


Ted-

Here's some info on downloading and converting youtube videos: http://www.gohacking.com/2008/10/download-videos-from-youtube.html

You could also request the original video sent by email from the posters. That would be the best quality.

Brian
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Yes

Postby fiddler » Sun Jul 11, 2010 8:42 am

Yes, and the best policy (etiquette) - I realized that and am trying to send Denise a message - hopefully she'll reply in time. Does anyone know if she is/who she is on TiMS?
...Ted
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My blog: www.my-darn-ms.blogspot.com
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Postby Downunder » Sun Jul 11, 2010 5:34 pm

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Newe Draft

Postby fiddler » Sun Jul 11, 2010 8:53 pm

OK, folks, a new draft is up. I haven't added the videos because it will make it too big. Still not sure about handouts... there is SOOOO much out there, and it would be easier to work with a sub-committee of their chapter afterward to put together a package, I think.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby mags4short » Mon Jul 12, 2010 12:30 am

Ted,

Can I be really cheeky and ask you for a copy of your presentation when it is done?

I would like to do similar myself here, but do not know where to start, Soooooooooo I thought that if you have already done it all maybe you can help me out :)

Tell me to get lost if you like, I know I am a cheeky ****** sometimes, but I am just thinking about saving time and energy and not getting myself stressed over it :)

Thanks Mags x
Alone we can do so little, together we can do so much :)
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Postby TMrox » Mon Jul 12, 2010 4:08 am

Ted,

Here is one of the reasons why I'm sure Greece is up and running treating CCSVI.

www.telegraph.co.uk/health/7882358/Can- ... elief.html
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