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.  ;;D

Hi Carl,

Glad to see such energy and enthusiasum with wanting to get the word out about MM disease. You're definately on the right track and your heart is in the right place.

There have been TV shows featuring MM patients from this site.  As an example, Daphne was on Mystery Diagnosis and the New York Times published an article on Kathleen.

When my brother was being treated at Stanford, by Dr. Steinberg, ABC was interested in doing a MM piece in conjunction with Stanford Media.  At that time, my brothers' surgery was filmed.

Additionally, many have had articles written about them and their MM journey in their local newspapers.

I think you should tell Oprah Winfrey your story.  You have an interesting story in that you are young, athletic and voted the runner-up homecoming King.  They may find your particular story as a vibrant, unsuspecting young person, with their whole life before them, interesting. It certainly doesn't hurt to try. You can let them know you are scheduled for surgery soon and invite them to follow you to Stanford to film your story.

Also, you may want to invite the Big three TV broadcast companies as well as your local TV stations to follow your story and follow you to Stanford.

If you get on the Oprah Winfrey Show, be sure to negotiate tickets to the show for all your MM family. Oprah might find it interesting to have an audience full of MMers.  Who knows?  Can't hurt to try.

Take care and keep us posted.

Hugs,

Lore

 

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... ;;D

Opray had a thing on her website lately to say if we have just been dx with a rare disease and how we are dealing with it. I sent in the info on my son, but not sure if they will take it because he may have to be 18 yrs or older.  So, I say, send it in!!!!!  We need to get this out there!!!!

Linda

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

Linda when did you see this on her website? & lore i get what you mean about everyone emailiing her.

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.

Hi Carl,

Due to your story containing personal health information (PHI) and your age being a factor, for someone else to tell your story, involves HIPAA (Health Insurance Portability and Accountability Act) regulations that prohibit another person from providing such personal health information to a third party. There are serious legal ramifications to HIPAA violations.

It is probably better, and in your best interest, to discuss getting your story out to the media with your parents.


Lore

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 e-mailed the show about 2 weeks ago. Hope one of us gets a call from Oprah, so we can get the word out there!!!

  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

here's the link...

https://www.oprah.com/plugform.jsp?plugId=220

Thanks, I sent a message.
Mary Grace

I sent a message too.

Kate

i sent a message too it needs to get out

         Danny

 Gosh how can she ignore all these stories! I sent in our story.I think it's very important that parents with children who have MM get the word out because it also brings the awareness that children actually DO have strokes, and that this is a very possible cause for a child's seizures. This is the first step toward diagnosing this disease in children because there is a misconception that children don't have strokes and when a child is diagnosed with seizures Dr. don't always look for a reason but just treat the seizures with meds.This all prolongs diagnosis.In my daughters case the MM progressed very quickly,within 3 months of diagnosis she had suffered several bad strokes.So any amount of time loss from misdiagnosis can be life altering.I'm glad to see that so many have sent their story!
mary and Kathleen

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

Just wondering if we can also all try to contact other media such as other news programs, talk shows. etc.

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.  ;;D

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

my son just had the surgery he was told by a doctor first to wait till he had a stroke. i refused to wait and got him his surgery sooner. i think a lot of dr.'s don't understand this disease. if you can get the oprah show to do it. i will come with my 3 yr old son and talk about alot of the misimformed dr's.  

im from wichita ks

if you find out more let me know
316 871 1543

im with you this needs to be talked about

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 contacted the show over a year ago to get the word out and see if there were any programs to help pay for testing of family members that are uninsured, but never heard back. I also think we should all have fund raisers and try to save money to start a moya moya foundation. does anyone know if we can claim the light blue ribbon for moya moya or how we do that? Even if we all sold DJ's beacelets to raise money?
Charl Molly;s Mom

I also sent a message!!!

ooh, that light blue ribbon is a great idea!  ;;D

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

Awesome!!! Great idea with the blue ribbon. I am actually gonna get a white t-shirt and gonna have a blue ribbon embroydrd on it to wear when I go to have my surgery! I feel breast cancer is an awesome cause and they have pink ribbons, but so is moyamoya and we should have light blue ribbons!!!

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.

Awesome Idea about the t-shirts.  I think I will do the same and maybe get some bracelets for when we go to the hospital for surgery.  At this point, maybe not even sell? maybe just to get the word out hand one to the nurses, etc.  Why don't we send a t-shirt and bracelet to Oprah with a brief story about moyamoya? I live in the Chicago area and can do this if you guys think that may help.

Linda

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

I think that'd be a great idea about sending stuff to oprah.

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

http://www.moyamoya.com/khxc/index.php

Everything is ON SALE!!!!!   ;;D

Have fun at her show!!  It's the LIVE one!!!  How exciting, I love her!!!

Steph

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!

Sorry I forgot to ask. What is the Oprah show about you will be attending, and good luck. It sounds awesome!!!

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

The site is just for the ribbon. I am just going to an embroydery shop to get one made for myself. If someone would like to do something like this then they should probably ask DJ because he is already selling T-shirts and I wouldn't want to step on his toes. Maybe he would like to sell the T-shirts because they would probably be a big hit.  ;;D

XOXO

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

Another note...instead of a ribbon like all of the other ribbons, maybe it could resemble a cluster of ribbons much like moyamoya arteries.

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

I sent one too, haven't heard anything.

Margaret

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 like the idea of getting the word out too! Someone mentioned letting the world know that kids can have strokes too... Destin is 14 yrs. old and never had a stroke or TIA's.  She has had headaches since the first grade and they have steadily gotten worse.  We were lucky that her pediatrician persisted until they found the Moyamoya.  It is also important to let people know that you don't have to wait for a stoke to find this disease.  She is scheduled for surgery Dec. 17.  

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.

Another suggestion...how about contacting the NSA.  They have a free magazine called "StrokeSmart".  On their site it has a fact sheet for childhood strokes.  Not once is moyamoya mentioned.  Ironically on this months cover it has the story called "Kids Have Strokes too".  It has stories from parents of children who have had a stroke.  The site list causes of childhood strokes and also states that the incidence of stroke in children is relatively low.  However, if it is your child...facts mean nothing... one in zillion, is one to many.  The fact is...Strokes happen in children and the public needs to know about MM.  Adults usually know the warning signs, children can't always tell us whats wrong.  We need MM education...maybe it could be correlated with NSA and Stroke awarness events and publications.

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?  !!!!! :-?

Exactly!!  That's why a neurosurgeon told me about Emily.  He said it looked like she was getting enough blood to the brain through the collateral arteries.  At first I was kind of relieved and then I thought about what I had read on here and sent everything to Dr. Steinberg.  I would like to ask these neurosurgeons if it was their child/mother/sister/brother/wife/husband would they wait?   >:(

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

I would like to ask these neurosurgeons if it was their child/mother/sister/brother/wife/husband would they wait?   >:(

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 have to say our neurosurgeon is at University of Chicago Comers Childrens Hospital.  His name is Dr. Yamini.  He works with Dr. Frim who was once with Dr. Scott.  He seems to know all about mm, however has done a handul of these surgeries.  I am nervous, however, it is the only way we could get it paid for.  Surgery is scheduled for Nov. 17
Linda

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

What about a morining show that everyone likes to watch, if Oprah is not responding. I work early in the morning so I don't know who is on. Like a Reguis and Kelly show?? I don't have a great story like many of you. Is Ellen still on the air? We should try all sources see if one bites!!
Becky

Yeah that whats i was thinking trying all sources, and seeing who responds, i know people who have amazing stories who have tired Oprah many many times, and for years, and never hears anything, so we need to keep it up all of us, try everyone, and keep writing them :) evrey single one of them, and never give it up,

i wanted to see if anyone tried ellen, ?? i wrote her and im waiting to see if i hear from her, lets hope someone answers our email and will help us, going to try EVERYONE lol

That's funny you should mention her show.I've been thinking aobut writting to her for a while now.I really like her show and I think she does a great job dealing with issues like ours.Your post gave me the nudge I needed I just wrote to her!
Mary Grace