I don't know about any of you, but the only thing I have received from the Oprah show is advertisement. My sister e-mailed her about 3 weeks ago telling her my story.

DJ
Do you think you can give me a deal on a bulk amount? 
Linda

I got tickets to the oprah show!  I have also been trying to get tickets as well as trying to get our word out.  They called me yesterday for the tickets.  However, I don't have any t-shirts or bracelets.  I am going to the taping on Friday.   However, I wil order some and send it to her!
Linda

So I check to see if anyone has an offical "thing" on this light blue ribbon and all we have to do is say we would like to be added to the light blue and we will be added. That means when someone gets on a sight they will see moyamoya as a light blue ribbon!

Amy,
who or what site did you find this out about the blue ribbons.  Also, then what can we do with the money if we start to sell them and then put towards a funding program for those who can't afford quality care.?
Linda

Hi there:

I just saw this post, so I am a bit behind the 8 ball here.  When I returned to So Cal from Stanford, I had actually written the Ellen show about Moya Moya.  I think they may have been on hiatus, but I never heard back.  I think anything to raise awareness would be great.  There are several folks on facebook and there is a moya moya cause on there....I just sent to over 50 friends to let them know about it.
Anything I can do let me know!!
Sandi

has anyone heard back from oprah?? i sent an email but i was wondering if anyone else has heard anything

I sent something to Oprah over a year ago and never heard back either.  I know that Oprah has been written to in the past from several people on this website and no one ever got a reply from her.  Maybe the key here is to go straight to her producers.  Let me see if I can get any contacts with her show.  I think the plan of attack should be to go straight to those people.  Another idea is what about going straight to Dr. Oz.  Orah has him on at least once a week.  And what better person to write to but to a Doctor.  If enough people write to him - we may get somewhere.

I agree with you.  It is funny, bfore I read this message I just posted about having a MM color, symbol, etc.  I belong to the NOCC (National Ovarian Cancer Coalition) and we have our teal ribbon, and they send bookmarkers to be passed out at different events.  They have brochures and posters to hand out to Doctor's office. Our OC saying is..."Ovarian Cancer....listen, it whispers" Maybe we could print some bookmarks, etc.  I know it cost money but maybe someone with a big heart would donate some.  OC has a "National" month as does Breast cancer. 
I also read about Oprah...that would be great if she listened. But,  I couldn't cope on TV.  I have an interesting story about my MM. How it was diagnoised.  Terminal Ovarian cancer saved my life...........what we thought was neuropathy from 5 years of chemo turned out to be MM.  It is funny how the MM symptoms are always  blamed on something else and over looked.  Like it is all in your head...pun intended! It took a lot of insistance by me for the doc's to keep digging and getting to bottom of it.  Actually 25 years before someone told me what was actually wrong. With out the cancer I most likely wouldn't be here now.  I had no internal carotid arteries at all.....just like they never existed.. When my local Doc finally told me he said just come back if needed.  I took it upon myself to research it online, and found this site.  I would never have contacted  Doctor Stienberg and had the Sta-Mca bypass if I had just sat back. Some woman on this site told me she would have carried her sister to California on her back if she had heard about Dr Stienberg before her sister became completely paralyzed and unable to feed herself or even talk.  She had just got back from Mayo...and they told her the same thing....come back if you get worse.  It hit me like a ton of bricks. I could end up like her...why hadn't anyone told me that?  I sent my reports to Stanford and within a week I was set up for surgery.  And my neuro Doctor didn't even seem to concerned about MM.  Thanks to moyamoya.com, Dr Steinberg, the unknown lady that spoke to me on this site and terminal cancer.

I can totally understand about doctors not knowing enough about it.  My son who has cerebral palsy, also started having some strange regressions (which shouldn't happen with cp) however the neurologist did a mri/mra of the brain and just said we will keep an eye on what was going on - I don't think she was even aware of MM.  All the neurologists would just look at me and think I am just an overly concerned mother of a child with cp -  We went to see another neurologist about a year and a half later due to regressions in school and we had another mri/mra done.  Now, a month and a half later, there was no call from my doctor, and since I am so busy with my son and his other problems it kind of slipped my mind to call him back.  When I finally called him, he was out of the country, so I tracked down the results of the mri/mra myself.  The radiologist report mentioned mm. - and said the dr. was advised  but he never called me!  He sent me to a neurosurgeon then and we were advised of surgery but this neurologist said it isn't too bad, we probably won't need to have surgery, but just wait.  Wait for what?  !!!!!

Audge wrote on Oct 27^th, 2008 at 11:51pm:

It's because they aren't Moyamoya Specialists.  You may be a neurologist/surgeon or whatever, but that doesn't mean you know how to TREAT Moyamoya.

Again, please let me urge anyone coming here for the first time to SEEK a Moyamoya Specialist (Dr. Steinberg, Dr. Scott). 

I see alot about writting oprah, but what about montel, i know he is not doing his show anymore, but i think he could still help get the word out, i think we would have better luck with him, i will find a way to write him, and try it. I personally dont think oprah will do anything, and besides i dont like her, but hey that me, I will try montel, and maybe do some research online to see what else we can try. take care everyone