I've thought of a way we as MM'ers & MMD supporters could help raise awareness on a much larger platform. So we can protect future MM'ers from the nurse or Dr. asking them, the patient, "what is moya moya?","what does it do?" & causing them to feel  that much more alone in this. So here is my proposal, WE take our message & bring it to the attention of the Oprah Winfrey show, It's  great national platform. I believe that if her producers hear wind of MMD and the insiprational stories I've been hearing they'll put it on the show or in her magazine or something [any exposure will be good]. Which is why, i'm raising this challenge to my fellow MM'ers/supporters. I Believe we shoud get as manyMMD stories stories to be emailed in at once so they can see how BIG this  "rare" disease really is. So let discuss here how we should go about this.....

Oh Yea, International MM'ers/supporters feel free to join in on this because then it will show them  that MMD is on GLOBAL scale as well.

So let's discuss this and figure out the best possible way to get the word out, I believe we have a duty to help future MM'ers.. other sugesstions on platforms are more than welcomed.  ;

but Lore i dont want it to just be on me, thats why i brought it to the attention of our mm family so we can do it together... ;

Hi Carl,

Were you thinking about having all MMers write to Oprah or were you thinking of contacting Oprah as the spokesperson for the group?

It might be overkill if we all write Oprah.   Either Oprah will ignore it or her show will be curious enough to answer but I doubt they would answer hundreds of individual emails. That's why I suggested you tell your story and you can mention the number of MMers registered on this web site and also reference this web site. For personal reasons, not all MMers may want to participate or be exposed on national television. I don't know.  Others on the board would need to give their input.

A while back, Michelle posted a link under "in the news" section of this web site for a new show that is looking for unusual medical conditions and anyone on the site had the opportunity to submit their story.  I don't know how many submitted their story and I don't know if anyone has heard back from the show. However, I think this particular show would focus on one individual rather than a group of people.

Exposure for the entire MM family may have to come from a show like Oprah Winfrey or 60 Minutes.  Still, I believe one person would need to contact the show.

I'm open to whatever turns out to be the concensus by all concerned and the easiest to do since we are all over the globe.  Of course with technology today, and especially the internet, we can do a lot globally.

Perhaps others will give their input on the subject.

Keep up the energy and enthusiasm on finding a way for us to get the word out about MM.

Hugs,

Lore

Oh I would love to be on the show to raise awareness of MMD, however it says in the fine print that you have to be t least 21 years of age, so one of you guys can send in my story if you like.

I took up your challenge. I went to the Oprah.com site and filled in the form regarding the diagnosis of a rare disease then hit the submit button. It didn't go through - I'm too darned wordy (which should come as no surprise to anyone who reads my messages). Took me forever to wean it to 2000 characters - characters mind you, not words. But, I did it and it's now zooming through the electronic circuits on it's way to Oprah herself (OK, maybe not Oprah, but one of her staff).
I can't even begin to imagine myself on television. I'm sure there are far more compelling and interesting stories within our Moyamoya family than mine. So, please send your story to her. If there is an interest in discussing Moyamoya on her show, I don't want to be the one chosen to appear. So please, please, please send in your stories.
Kim

   I went to her web site but didn't see a section that asked for a rare medical condition is it gone? I didn't see a way to just send a message only to reply to a topic that's already listed.
Mary Grace

Thanks, I sent a message.
Mary Grace

i sent a message too it needs to get out

         Danny

I too, sent in our story.  It is important to the lives of all those that have not yet been diagonised that their doctors know what they are looking at.  Maybe with our help, this will now be possible. 

Margaret

I believe this very important to get the word out, The last thing i had on my mind after i grduated h.s. was having a stroke, I thougt it was just something devastating i learned about in my medical terminology class. I said, "It would never happen to me." Because i was so fit and low and behold it happened. But I accept it now & I've met some really incredibl people because of it.  ;

& yes feel free to post links up for other media sources that you feel would be beneficial to the MoyaMoya Movement

I believe that alot of neurologists are not educated and try the "wait and see" tech. My doctor told me and my mother that we would try channel blockers and that we would just keep our fingers crossed and "wait and see" what was going to happen. I have already had a stroke in April 2008 and I have 100% blockage on both sides. How do you think the "wait and see" approach woudl have turned out? The doctor and neurologists need to be educated on this disease and informed the "wait and see" approach does not work, by telling someone this they may be giving them a death sentence. If they would just tell them about the surgery and give them the opportunity to make the decision for themselves. Surgery is the only thing that works and the neorologist need to know this. Educate, educate, educate!!!

I also sent a message!!!

I think the blue ribbon bracelet is a great idea too!  We need to think of a way to get on the media with these blue ribbons!  Maybe talk to the news networks!

Linda