This Is MS Multiple Sclerosis Community: Knowledge & Support

I find it infuriating that no major news outlet has picked up on CCSVI in the USA. Why don't we keep a running log of who we've contacted so far.
Here's mine so far:

New York Times - contacted 11/30 - no response
National Public Radio - contacted 1/5 - no response yet
Here and Now with Robin Young - contacted 1/6 - no response yet

CBS where are you!!!

I'm not sure if you know tzootsi. Cheer was apparently interviewed by CBS. She has yet to hear when that will be aired.

I have sent info to CNN, FOX, CBS, NBC, ABC, USA Today, Seattle Times, college newspapers, hospitals in area and anywhere in between. I even sent a skit idea to SNL for 'Really' with Seth Meyers. This country is covered. What they choose to do with the info is up to them.

_________________
Diagnosed 1994, Self EDSS is 6.5

written to...Oprah...Dr.Oz...Whitehouse..and Nightly news.......

Leetz

_________________
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Here’s my list so far. I did get an answer from Omar Khan, at Wayne State University Multiple Sclerosis Center, who stated that they were in the process of planning to conduct research into CCSVI. So I’m batting 1 answer out of 8 from my e-mail effort so far.

11/07/09 nicki@plainviewdailyherald.com
11/23/09 60m@cbsnews.com
11/23/09 newsdesk@missoulian.com
11/23/09 publisher@ravallirepublic.com
11/23/09 ctalbot@msassociation.org
11/23/09 editors@medicalnewstoday.com
12/10/09 okhan@med.wayne.edu
12/11/09 kpixnewsassign.editors@cbs.com

Lora

Hi again,

I did some searching through the treads and found references where all the places below were contacted. If people could add the email address to those not there it would be great!! I want to write ONE personal e-mail about CCSVI that I can e-mail to all the folks on the list. Then a week later, I'll format another e-mail and send it to all the folks on the list, and if that list keeps growing, all the better.
So help me out with those missing e-mail addresses, add some if you've got more and start composing your e-mail letter! Let's make this as simple as possible and keep it going!

Lora

Contacted by E-mail regarding CCSVI

New York Times
The NY Times science editor
Gina Kolata - Try sending her an e-mail at scitimes@nytimes.com.
She writes in the ""forty years' war" series.
National Public Radio
Here and Now with Robin Young
Senator Debbie Stabenow of Michigan
CNN
FOX - americasnewsroom@foxnews.com
CBS - 60m@cbsnews.com
NBC - Nightly@NBC.com
ABC - http://abcnews.go.com/health
UTSW
USA Today
Seattle Times
sent a skit idea to SNL for 'Really' with Seth Meyers
Montel Foundation
Oprah...
Dr.Oz...
Whitehouse..
Nightly news
CNN Viewer Communications Management
Chapel Hill
http://www.ireport.com/ir-topic-stories ... cId=147056
Meredith Vieira of the Today show
http://www.propublica.org - non-profit newsroom for investigative journalism
email:suggestions@propublica.org
http://www.sciencefriday.com
nicki@plainviewdailyherald.com
newsdesk@missoulian.com
publisher@ravallirepublic.com
ctalbot@msassociation.org
editors@medicalnewstoday.com
okhan@med.wayne.edu
kpixnewsassign.editors@cbs.com

Senator Patty Murray http://murray.senate.gov/email
Fox News cavuto@foxnews.com
Swedish medical Center jennifer.nagel@swedish.org
Seattle Times nbrodeur@seattletimes.com
King 5 News (local) newstips@king5.com
AMI Radiology (local) contact@amiradiology.com


I still have to dig up some others I sent. Most of my correspondence has been mail.

Thanks SandyK, I'll keep adding the new posts to this list as they come in so we can each print it out easily. Not only that, it keeps it bumped up on the tread so others will see it and hopefully add to the list also.

Contacted by E-mail regarding CCSVI

New York Times
The NY Times science editor
Gina Kolata - Try sending her an e-mail at scitimes@nytimes.com.
She writes in the ""forty years' war" series.
National Public Radio
Here and Now with Robin Young
Senator Debbie Stabenow of Michigan
CNN
cavuto@foxnews.com Fox News
americasnewsroom@foxnews.com FOX
60m@cbsnews.com CBS
Nightly@NBC.com NBC
http://abcnews.go.com/health ABC
UTSW
USA Today
nbrodeur@seattletimes.com Seattle Times
sent a skit idea to SNL for 'Really' with Seth Meyers
Montel Foundation
Oprah...
Dr.Oz...
Whitehouse..
Nightly news
CNN Viewer Communications Management
Chapel Hill
http://www.ireport.com/ir-topic-stories ... cId=147056
Meredith Vieira of the Today show
http://www.propublica.org - non-profit newsroom for investigative journalism
email:suggestions@propublica.org
http://www.sciencefriday.com
nicki@plainviewdailyherald.com
newsdesk@missoulian.com
publisher@ravallirepublic.com
ctalbot@msassociation.org
editors@medicalnewstoday.com
okhan@med.wayne.edu
kpixnewsassign.editors@cbs.com
http://murray.senate.gov/email Senator Patty Murray
jennifer.nagel@swedish.org Swedish medical Center
newstips@king5.com King 5 News (local)
contact@amiradiology.com AMI Radiology (local)

ruthless

You mentioned the msassociation. This is the MSSA - we've got it covered - Dr. Jack Burks posted his article in December. http://msassociation.org/news_center/ar ... sp?a=ccsvi. A follow-up article will be coming.

Thanks for putting together the list -- this is quite an undertaking!

Sharon

Thanks Sharon,

I felt those of us who couldn't "pound the pavement" could maybe "pound on the keys" and make a little noise too!

What great stuff turned up on the TIMS forum today, really a good day!!!!

Lora

Add another:
sdoherty@madison.com Wisconsin State Journal/Capital Times. I sent him an email yesterday about CCSVI.

I believe.

_________________
Dxd 1994 RRMS, 2008 SPMS
Climb on!

Awesome!

The list just encourages others to add to it. It helps to see people binding together in a unified effort. This list could prove valuable in the future. It will show who was contacted, and given the opportunity to get the word out. Those that shrug it off, we'll have it documented here forever! Those that fight for the cause will gain great recognition! What U.S. news station will go down in history as the first to fight for the cause?!!

I have sent emails twice to the white coats section of the Boston Globe (which is owned by NYT still .... ) and never had any response...you would think they need news to fill their pages, ugh.

Hi Sharon,

I couldn't get your link to the MSAA to open?

Microsoft VBScript runtime error '800a0035'
File not found
/news_center/article.asp, line 31

whyRwehere - if you would like to include the e-mail addrerss for "the white coats section of the Boston Globe (which is owned by NYT)" to the above list, the rest of us can help by adding our e-mails to their inboxes as well.

Thanks for the kudos Vonna, I tackled what looked like something I could contribute to CCSVI moving forward.

Thanks VailKin I've added your e-mail contribution and it will show next time I print the whole list.

Thanks,
Lora

This is the blurb for White Coats from the Boston Globe: