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Posted: Thu Feb 04, 2010 12:28 pm
by akaheather
Has anyone tried contacting Mitt Romney? His wife has MS.

Posted: Thu Feb 04, 2010 12:28 pm
by Cece
lol, good point!

edited to say: naturally this was in reference to the post before the post about this, which does not even show on this page!!

Posted: Thu Feb 04, 2010 12:29 pm
by akaheather
Has anyone tried contacting Mitt Romney? His wife has MS.

Posted: Thu Feb 04, 2010 12:30 pm
by Vonna
Yes! Yes! Yes!

I have an idea for us all. I have been studying this subject, and believe I might have found the person we are looking for.

Clay Walker is a well known singer and guitar player int the country music world. He was diagnosed with RRMS in 1996, at the age of 26.

He is a person with MS, and sincerely wants to find a cure.

He founded the organization called "BAMS" Band Against MS

He raises money for MS research, and donates it to such organizations such as NMSS and CMSC.

Clay Walker needs to know about CCSVI.

He needs to know how grateful we are to him for all he has given already.

I believe Clay Walker would be willing to help raise money and awareness for CCSVI if we all asked him.

Please visit this page!

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

Thank you for your consideration in this. He may not be the most well known person, but if you watch his videos, I think you will get the idea that he is sincere.

Here are some of the statements from his videos-
Video 1

"Like David and Goliath, we are a very small intity with great intentions and a big heart. I believe that Band against MS will be one of the people on that ticket when it says, “cured”."

"Hope, I think that’s what I am to people who have MS, I’m not gonna give up until we have that cure."

Video 2
“They say that you should leave the world in a better place than you’ve found it. When I was diagnosed with MS, fortunately there were people who came before me who paved the way for medicine and being able to manage the disease, but I want to take it a step further and find cure."

“My absolute goal is to find a cure for multiple sclerosis."

Thanks again, Lavonna

Posted: Thu Feb 04, 2010 2:30 pm
by zinamaria
It's done! Thanks Lavonna. I just sent an email through the Bands Against MS site, they have a contact, and here is a ph number for the organiation

615-297-8875

I am currently traveling so calling is harder for me, so I did send the email and if I get a response I will post again. But I think more people need to do this so we are heard!

peace,
zina

Posted: Thu Feb 04, 2010 2:38 pm
by Vonna
I wondered which would be better, to contact through the organization or through the YouTube channel. I chose the YouTube channel so we could all view each others comments and keep track of how many had actually posted. However, if you all think the other contact would be better, that's fine too, so long as he gets contacted!

Thanks for posting the phone number!

Lavonna

Posted: Thu Feb 04, 2010 3:51 pm
by AnnaP
Hi everyone,

I am very disappointed in Montel. I used to watch his show and admired him for being out spoken about MS and Marijuana. I thought he would have been the one person we could count on.

I think Lavonna is right about Clay Walker, I will email him ASAP. He's our new go to person about CCSVI, as is Clive Blurr and Terri Garr.

Posted: Thu Feb 04, 2010 4:50 pm
by mangio
Anna, I hope Avis gets the exclusive that she deserves...read BNAC exciting
announcement we don't need any others now.

Posted: Fri Feb 05, 2010 2:00 pm
by Vonna
Others can help awareness and raise money.

Check out this link!

http://en.wikipedia.org/wiki/List_of_pe ... _sclerosis

It is a link to a list of people with Multiple Sclerosis. It has valuable information including links to their websites and contact information. These people should be contacted, however, lets all contact the same persons at the same time. If you would like to contact someone on this list, please let others know that you are doing so.

Posted: Sat Feb 06, 2010 12:40 am
by zinamaria
got back a reply from clay walker's BAMS director...a simple not acknowledging they got my email about CCSVI, but that was it, but at least they responded. you have to ask them to respond, so i did. has anyone else written to them? i also sent them the link to read the recent newsletter from buffalo, ny
i really believe the more people write in the more chances CCSVI has..

zina

Posted: Sat Feb 06, 2010 1:51 am
by AndrewKFletcher
AlmostClever wrote:I dunno...

I just saw Montel on a commercial pimping $1000 payday loans... his reputation is apparently not what it used to be! At least it dropped a few notches on my scale!
Loool

More about Clive Burr

Posted: Sat Mar 12, 2011 2:13 am
by frodo
More news about Clive Burr, MS patient and ex-drummer in the British band "Iron Maiden".

It seems that Iron Maiden set up the "Clive Burr MS trust fund", which was still active six months ago. It seems that there was a tribute concert in september 2010 for the foundation in Holland.

http://www.zwaar-metaal.com/maidenday/m ... _fund.html

I still didn't get an address to contact him though.

Posted: Sat Mar 12, 2011 8:20 am
by 1eye
Teri Garr has MS too.
She reps Rebif, I think. Let's face it, most of these celebs probably have highly-paid neurologists whose opinion they would not question. In fact, that is a common situation: the more neurology you can afford, the more unlucky you are (assuming it is just bad luck that their opinion has become so prized), and the less likely you are to have one whose opinion you would question. It is only us lucky SOBs, who have had the ones I have had, who have made it so easy to question them.

Posted: Sat Mar 12, 2011 8:22 am
by pklittle
AlmostClever wrote:I dunno...

I just saw Montel on a commercial pimping $1000 payday loans... his reputation is apparently not what it used to be! At least it dropped a few notches on my scale!
oh brother. I'm not a fan of Montel. He does not seem genuine to me. He's always pushing his juicer/blenders too.

Posted: Sat Mar 12, 2011 12:32 pm
by patticake66
It doesn't matter how much money you have....I am not rich but I see one of the best neurologists NYC/the country has to offer. As a matter of fact, many celebrities see this doctor. Celebrities such as Janice Dean, the meteorologist for FOX news. Speaking of FOX, has anyone reached out to Neil Cavuto? Also a pwms. Sometimes I think that news media/journalist would be more open minded than t.v./movie celebrities when speaking publicy about their MS. Janice Dean did a piece on her MS a few years ago. Maybe she is willing to do another piece with CCSVI info. in it. It is worth a shot.