For those of you who are attending the Las Vegas 'get together', here is a press release that has been put together to send to the news media.  If you would like for your local TV news, newspaper, or radio stations to know about our event and possibly do a story about it, please send them this file.

For those of you not able to make it to Vegas this time, feel free to send it to your local media also!

Right click on the link below, "Save Target As" to save to your hard drive, then you can attach it to an email to send to your local media from there...

http://www.moyamoya.com/MMLasVegasPressRelease.doc

Looking forward to this meeting and the many more that will follow!!!

[smiley=headbanger.gif]

DJ

Wow!  Our first ever press release!!  Just to let everyone know, I'm sending this off to the Las Vegas papers and tv stations.  I'm also sending to the Washington Post, my local paper, the Los Angeles Times, and some of the DC tv stations.  I'll let you know if I send out to anyone else.  

Also, if anyone is curious as to what media there is in your area as far as the papers and tv stations, let me know.  We have a program at work where I can pull up all the media in any area and then tell you what reporters deal specifically with health/medicine issues.

Thanks,
Michelle

Great Press Release!  I'm trying to get it out there too!  My brother writes a featured article for the Jewish Exponent (obviously a Jewish publication!).  Anyway, it's a weekly newspaper published throughout the Philadelphia and surrounding areas.  I'm seeing if he can talk to his people about getting it in a upcoming issue.

I'll also be contacting the Philadelphia Inquirer and some local TV and Radio Stations.

-Shari

Super Press Release! 8)

I have forwarded it to our local newspaper and TV stations. [smiley=wink2.gif]

It will be so wonderful to get the word out about moyamoya.  It will be interesting to see how many newspapers/TV stations take an interest in it.

Great work DJ and Michelle [smiley=thumb.gif]

Lore

Amazing!  Thanks, DJ.

Michelle...I'd like to take you up on your offer and ask if you would kindly send me a list of papers and t.v. stations in my area...to be sure I don't forget anyone.  :)
I just sent KITV a follow-up email since they did show some interest in doing my story on my recent experience w/MM.

Aloha,
Shan

I just sent out the press release to 21 media contacts in Las Vegas, locally, the DC area, and the Washington Post, Los Angeles Times, Reuters, Dow Jones, and the Associated Press.  WooHoo!!!!

Great Press Release !!!!!   ;;D

Sure can't wait until we're in Vegas !!!!

;) CarasMOM

great job on the press release!!

i'm sending it out to San Antonio Express Newspaper, New Braunfels Herald Zietung, Kens 5 News, WOAI 4 News and also KSAT 12 News, as well as the Seguin Newspaper

Hillary

Hello ~

Escellent job on the PR!! Even though our local paper just did my MM story, I went ahead and sent it on to them as well as many other interested folk - it looks so nice! Great seeing the word get out more!

LA

Hey Everyone,

Just a note to tell you all that I got a response from KSAT 12 News.  They will be at my house tomorrow at 11:30 for a TV News interview.  We are very excited but very nervous as well.  I'll let you all know how it goes.

Hillary

Very cool, Hillary!  Yes, please let us know how it goes.  I will be very anxious to see how it went.  If you let me know who the reporter is that did your interview, I will look into getting a copy of the tape through another program that I have called Critical Mention.  

Michelle

Oh my gosh Hillary!!   [smiley=thumb.gif]  That's terrific!  I wish the media here in Hawaii would respond like KSAT 12 News.  My emails are still somewhere in computer "la la land"..... :-/  That's unbelievable that they responded so quickly!

Let us know how it goes....

Seachelles,  Thank you for sending me a list of media contacts here in Hawaii.  As I mentioned to Hillary above, I've sent emails; however, no responses thus far.   ::)

Aloha,
Shan

Good luck, Hillary. How wonderful that you are willing to do this. Thank you on behalf of all of us! It's so important to get our story out there.

...................Kathy

I forwarded this to the STROKE MAGAZINE but no response yet.

Someday MM will be on the front pages somewhere!
Like Jill said "ONE DAY at a time", and that day is coming
closer & closer.

2 thumbs up to all,
itsme

Michelle...

....can you give me some contacts in Phoenix to email the press release to ????

Thanks,

CarasMOM

Cara,

I will look that up and get back to you later today.  I will send it to your email.  :)

Michelle

The press release is great. I will work on papers and news here in GA asap.

Christy

Ok Everyone

Our story will air tonight at either 5pm or 6pm.  I am going to try and get someone to record it for me.

Talk to you all later
Hillary

Awe....I got a call from KHON News (FOX affiliate), and they are NOT interested in doing a MM story right now....but they "will call back" if they decide to do one at a later date...

I'm still pluggin' along..... :-[

Shan

Hi Shan,

[smiley=sayyes.gif]It is really "something" the TV station contacted you.  It's a start.  I've heard nothing from the 2 newspapers and 3 TV stations I contacted.  I keep bugging the local newspaper to write a story since we live in a small town and there is one other person in the town that also has been diagnosed with MM.  You're right in that it takes persistence or as you mentioned "pluggin' along". I believe if you knock on their door enough times they will finally answer.

Good Work! [smiley=thumb.gif]

Hugs,

Lore

Hey Everyone,

I will have a copy of our interview with KSAT 12 News with me in Las Vegas.  If anyone is interested in watching it, just let me know

Hillary

Hi Hillary,

I'm interested in watching the interview.  It will be nice to see how the news media approaches the subject and the kinds of questions they ask.  If others get the opportunity to have an interview, it will help to be prepared with the type of questions they ask.

Thanks and see you in Vegas.

Lore

Hillary,

Are you able to post it on line or send it via email?  I'd also love to see it  :D  

Take care,
Shan

Hey Shan

I was told I couldn't email it because it was too big of a file.  I am working on getting copies made, and hopefully I will be able to send one to you after the Vegas Trip.

Hillary

I would love to see it.

I got to do a very brief interview with KITV4 6 o'clock News last week Wednesday, August 10, 2005. I only received the phone call about 2 hours prior to the interview, but I didn't want to give up this opportunity.  I was hoping that they could do a more "in-depth" story on what moyamoya actually is and interview my neurologist to answer any direct medical questions; however, I believe this interview was just to promote my recent fundraiser event coming up so they wanted to basically hear my story....  Our interview lasted about 30 minutes, but the segment that "aired" was no more than about a minute and a half to two minutes....way too short to explain what MM is and how it affects individuals....

Nonetheless, I've received responses from others here in the Islands that also have this rare disease.  :)  I hope to be able to organize a Hawaii Moyamoya Ohana Support Group where we can meet once or twice a month.  ("Ohana" means "family" in Hawaiian...)   I'm also directing them to visit this site if they haven't already been here.....to post/look for questions & answers, concerns and most importantly, support from all of you!   ;)  

Slowly but surely, we will all work together to raise MM awareness.

Aloha,
Shan

http://www.thehawaiichannel.com/news/4836773/detail.html

http://www.thehawaiichannel.com/news/1298194/detail.html


p.s.  Hillary, please PM me if you can send me a copy of your interview.   ;;D

Shan-
Congratulations on a great article and video!  Nice job!  I'm sorry they didn't give you the airtime you wanted..I know how hard it is to "sum it up" in a few minutes!  I was recently featured in my local paper but the "angle" was how my yoga classes aided in my rehab.  I certiainly didn't get the MM info in there that I would have liked to.  I knew I was in trouble when the interview was 45 minutes and the photo shoot was two and a half hours!  ;;D But every little bit helps and it sounds like you have definitely reached out to others.  You should be very proud of yourself!!!
Hugs,
Chelsie

Thanks Chelsie!  My initial reaction when seeing the broadcast was a feeling of embarrasment... I thought I looked terrible  :-X...but I know my intentions and the reason for doing it and the possibility of touching other's lives.....which makes it all worth it!  :)

Wow...your photo shoot took 2 and a half hours on top of the 45 minute interview?  phew....

By the way, how has Yoga helped you?  I signed up for my first Yoga class (Yoga & Anxiety), but it was fully booked.  :(  I'm not quite flexible though, so I have my reservations about it anyway.)  I picture someone in leotards sitting on the floor with their legs behind their head. OUCH!   :o hee hee...  Seriously, doesn't one have to be "somewhat" flexible or in shape for Yoga?  The class I signed up for said that patients have to be in "general good health" in which I'm not quite sure I'm there yet.  Please let me know about how Yoga helped you....I'd like to hear about it if you don't mind sharing...  :D

Thanks,
Shan

p.s.  I just looked at the video, and I noticed they focused on my hands at one point...did anyone notice DJ's blue MOYAMOYA reminderband?   ;)  I wish I turned it so they could see "MOYAMOYA.COM" better....