This Is MS Multiple Sclerosis Community: Knowledge & Support

I was watching the e-patient Dave TEDtalk which led me to their forums discussion the subject of collaborative patient-sharing



I think this could be another great opportunity to share the CCSVI collaborative story. Anyone have any suggestions on the best way to approach this?

Amazing idea Daniel!

TED has a nomination page, right here: http://www.ted.com/pages/view/id/73

I think it would be nice to select one of us and then everyone should nominate our choosen one...
Now... the question is: Who is brave enough to speak at TED?

Either Cece or Kamikaze-Marc. Or maybe they could do the stunt together - would be the first TED-double-speaker-event, as far as I can remember.

I would speak, in a heartbeat, for I speak (brag)all the time to others about this thread, of the community, of the incredible resource and support here, information etc.

I also found Zamboni and Salvi by doing my own search (had not found TIMS yet) when I went into that huge relapse in the fall of '09 while living in Italy and discovered what they were doing as I was searching to see what more I could be doing....picked up the phone, called Zamboni and was treated by Salvi later that week.

I am a huge advocate, as we all are, of taking responsibility, as much as we can, for ourselves and not JUST waiting on doctors etc....but also, the fact that we have four or more doctors involved with us on this thread is historical as far as the patient/doctor relation, being treated with respect and as intelligent beings who can understand our bodies and our disease!

Anyway, how to go about this, I guess I'll look for a phone number.

Any other ideas?

Z

I think Joan is the one. She started this and has 20,000 followers on Facebook. She's a great speaker (and singer). She did a presentation at her home that was great. It was warm, humorous, informative, and captivating.

There's a woman who spoke at Ignite Boulder, her name is Ceci Irvin, on her Polish Catheter. She's great. http://igniteshow.com/videos/my-polish- ... ch-cure-ms

Zinamaria, I didn't realize your history with this. You're a pioneer too! A small group of us know about this for over two years. It's amazing how it's grown exponentially.

I think Joan is also a great choice, and it does not seem that it needs to be one person, but perhaps a few could expose the various experiences.

Yes, Zamboni referred me to see Salvi first thing, and the day we went up to see Salvi at the Bellaria Clinic in Bologna (three hr drive from Umbria and my right eye was crossed over, which made being in the car a pain, so I ended up with a patch so I would not see double!) we called Zamboni who is in Ferrara right then and there from Salvi's office to see about the Liberation. But they had just been stopped! Literally that week. So Salvi put me on Cortisone for five days.
This did halt the relapse, but because I was in the middle of one, they were hoping to perform angioplasty to see if it would halt the attack....

We were also interviewed by CBS news, Dec 7th to be exact, the day we drove to Ferrara to meet Zamboni (I had had the cortisone on the Thanksgiving weekend and was by then doing a bit better) and the news team was there to interview Z and Salvi, and we just 'happened' to be there (Salvi is a wizard and had planned for us to be there when CBS was there because, I think, we are Americans and my husband is a published author) and they were looking for exposure, which we wanted to give them, like Jeff and Joan.
Unfortunately, CBS backed out and never aired the piece, as we all know.

That's a bit of the history.

Whatever happens, whoever speaks, it's a great idea!

I practically stole Ceci's name from her without realizing it, then got mistaken for her once or twice....

I think Joan is an excellent choice. If it seemed better to have a person with MS, then I am not sure who. I am knowledgeable about CCSVI but I also have my cogfog moments.

I pick Joan and Jeff, an unbeatable team.

zinmaria...I remember your story, and am still so sad that CBS was never able to air our interviews from December '09...I was in touch with the producer from that segment recently, and let her know that ABC is on the story with Montel/Dr. Oz. Maybe that will get some interest back at CBS. We can hope!

Jeff and I could maybe do it as a team...since he was the one who had the "on the table" experience and is living the results 2 and a half years later, and I was the one putting it together for him. We've done the powerpoint presentation (Michelle saw) a couple more times at house parties, to raise awareness. And Jeff was a terrific commencement speaker at Eastman last May, where he talked about CCSVI in terms of unexpected turns in life. So, if you want to nominate us, we'd be honored. If contact info is needed, let me know via PM...I can put it up on the CCSVI in MS page to get votes. We'd be honored to represent this amazing community...
best,
cheer (Joan and Jeff)

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

If CiCi is the woman I am thinking of, the short talk I saw of hers was great! She is a wonderful speaker! I think the contribution TiMS people can make is suggested stories, facts, arguments, observations, pictures, etc. for her or his or their use in a speech. The speaker makes the ultimate choice but that doesn't stop anyone else from learning the ways of TEDdom and contributing crowd-sourced dynamite material that is easy to digest and cuts through the BS. I propose a separate or sticky thread for this purpose.

Topics? Titles?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Yeah, I stayed in touch with the producer too, for many months asking why it had got sidelined....no real concrete answers there....

Joan, it would be wonderful if you and Jeff did this...you have my vote!

Z

We're honored to have Joan and Jeff Beal represent this amazing community.


We need someone who is an excellent writer to officially nominate Joan and Jeff by filling out the TED Speaker Recommendation Form aka "Suggest a Speaker" form. This is a crucial step in getting the attention of the "speaker selection team."

Joan, if you don't already have someone to write up the answers for the form, I nominate Cece for the task, in consultation with you, of course.

Edited to add: The next TED session in the U.S. is February, 2012.

Been thinking of this since a while; Joan, Jeff, Cece; yeah! Sure you all get my support!

Joan and Jeff get my vote. They would be awsome.