Hey everybody ;D

Let's practice with Dj's new forum and get things movin' on this new message board. Let's show him how much we appreciate all his hard work and chit chat up a storm.

We're all family [smiley=gocrazy.gif]

Just wanted to say HI!  I am one of DeeJ's best friends and have been reading the board since the first day it was up.  So, I finally decided maybe I should register and interact with people from the boards!   ;)

Hi Kelli, Welcome!

Any friend of DJ's is a friend of ours. He's an angel in our eyes. I'm sure you know that already. Thanks for your support. That's what this is all about.

So...what can you tell us about Deej that we don't already know? [smiley=sgrin.gif]

yeah give us all the info  [smiley=crackup.gif] Let's show DJ how much we can learn from this site  ;)

Well....he has a room in his house that I call the dungeon   :o ;)  And he has a fat cat named Sadie.  Not much else to tell about him.  He's pretty boring!  LOL [smiley=laugh.gif]

Thanks Kelli, you're a good friend in not telling us any juicy stuff where we can bust on em.  ;D  Although, we could have had a good time with him. Think about it...  [smiley=wink2.gif]

I know DJ has worked very hard on this web site [smiley=laugh.gif] Now I wish we could all find some way to have a moyamoya reuion and all meet somewhere in the middle ::)  I know I would attened anwhere in the United States if someone was able to set something up-----like emailing everyone or setting a page for anyone interested in a MM meeting where they could sign up,  thensee when and where !!!!! ;;D

[smiley=hiya.gif]

I agree. I'd love to meet everyone someday... especially DJ and give him a big hug. I know I'd do whatever I could to be there. If I'm not mistaken, I believe DJ mentioned having a gathering of everyone from his other website, "cluster headaches.com" and it worked just as you said. I bet it was great meeting everyone and having faces to go with all the stories.

Who knows, maybe one day WE will??  [smiley=sayyes.gif]

Well I'll start the ball rolling!  I would be more than happy to help organize some kind of meeting...I'm in the Philadelphia area.  Perhaps in the spring or summer time - to give us plenty of planning.  Any takers?? - Shari   [smiley=wave.gif]  

[smiley=clown.gif] I'd love to help, but I have no clue how  [smiley=huh.gif]. Let me know what I can do and I will be more than happy to do it.  [smiley=shore.gif]

I guess If I'm going to do this I would need to know what kind of interest is out there.  Who would be interested in something like this??  Would you want to organize a one day thing or a weekend thing?  Please feel free to send me an e-mail or private message through this web site as to interest or ideas.  Thanks! - Shari

hi everyone, i cant find the words to explain how much i'd love to meet all of you, but living in Australia, i have to be realistic and realise, that for me, it just wont happen......however when this reunion does take place, i'd love to see the photos, so i can put faces to the names........A reunion is a fantastic idea, im sure it'll be a huge success wherever and whenever it is....take care
Kalise

I am so excited to have someone to talk to about Moya-Moya. I hope one of you will e-mail me soon. I am pretty new to all of this internet business.


                                                  Sincerely,

                                                   Michelle

Michelle wrote on Dec 8^th, 2003 at 8:10pm:

I am so excited to have someone to talk to about Moya-Moya. I hope one of you will e-mail me soon. I am pretty new to all of this internet business.

[smiley=wave.gif] Hi Michelle, Welcome!
I read your post on the guest page and I was so glad to hear your daughter, Cally is doing well. We love success stories in our mm family. This is the forum to be in to get to know everyone. Many will come here with questions and experiences with moyamoya. You'll get to know some wonderful people. You just may be able to answer questions for them when they're experiencing what you've already been through. This family has been a God send to me and my family this past year. I think you'll love it here.  Oh, and by the way... a few of us are new at this internet business as well.  :) We'll learn together as we go along. DJ will help you in any way he can.

Mar

Thank you Mar! Did you or someone in your family have Moya-moya? If so, How are they doing. After reading some of the stories on this site I feel very blessed that we caught Cally's disorder in time.

I second Mar's post!  You've come to the right place to find support and answers.  I'm glad to hear your daughter is doing well.  We love success stories!! -Shari  [smiley=hiya.gif]

Yes, my niece "Mandy" was diagnosed with mm right after Christmas last year. Her mom, Nancy N., also posts here on the boards. They all have been through a rough year and have taught me so much in adversity. (As have many on this website) Mandy had several severe strokes and we believe DJ and this website saved her life. They knew little about mm here in Philadelphia, so Nancy took Mandy to Stanford and had her surgeries with Dr. Steinberg (An expert on moyamoya) and she is doing wonderful now. Getting stronger every day. Thanks be to God.

Mar :)

Michelle, Welcome!! I will sit down later tonight and e-mail you.But your right it is so wonderful to have others to talk to about what you are going through.My daughter was diagnosed almost 2 years ago (January)She is now 6 yrs old.She is doing great now.This is such a great place for info.
Mary Grace

Hello all. I'm glad I found this place. My sister-in-law was just diagnosed with Moyamoya. She is curently seeing a specialist here in Houston and they are discussing her treatment options. I have done EXTENSIVE research on the internet on this disease. I'll be getting my sis on here as soon as possible. In the mean time if there is any way I can help out around here I would love to offer my services. (I work for a large computer manufacturer) Feel free to contact me.

:)Hi!and welcome. This is a great place for everyone that has had their lives changed by moya-moya. My daughter had surgery in Houston in 2001. She was at Texas Children's Hospital. Her Dr. was Dr. Robert Dauser. How old is your sister-in-law and do you know who her Dr. is? Sincerely, Michelle.

She is 32 and has 2 kids. I don't remember who she said her doctor is.

Hi!  My name is Patti and I live in the Philadelphia area.  My 9-year-old son Michael has Moyamoya.  Dr. Scott performed surgery on Michael about two months ago -- Oct 13.  Michael seems to be doing fine physically but emotionally he's a reck.  He's having a hard time dealing with the surgery and the fact that he has an incurable disease.  Did anyone else experience these problems?  In any event -- I'd be interested in attending a MoyaMoya get-together.  Sometimes it's nice for children to know that they are not the only ones going through difficult times.  Thanks.

Hi Patti - I'm glad you found our moyamoya family.  I'm actually going to see Dr. Scott for my first surgery on Monday and I just found out today that they are going to do my other side a week later.  I had made the assumption that I would have more time between the two surgeries but I guess it's mixed blessings to get both sides done "at once".  While I haven't experienced the same emotions as your son (I'm 29 years old) my parents have, in their own way.  I have the attitude that I have a rare disease - let's fix it.  It's a bit more difficult for my mother to reconcile with.  However, as we've said to many people, you have absolutely come to the right place.  This is a wonderful support site, thanks to DJ, and all of the people who are willing to share their stories and support.  Good luck to your son!

-Shari

STrantas wrote on Dec 23^rd, 2003 at 3:06pm:

I have the attitude that I have a rare disease - let's fix it.

Shari, bless your heart!  You have the exact same outlook I did...  Hang in there!  I have the feeling you're going to be posting messages to the board from your bed in the ICU within a few hours of your surgery, just like I did!  Just tell your ICU nurse you NEED a computer and they'll wheel one over to you bed like they did for me!!   ;)

We will all be thinking about you on Monday and I promise you all... we'll have a moyamoya.com get-together someday soon!  It'll be awesome!

[smiley=headbanger.gif]

PS.  Make sure Dr. Scott knows we're here!

Hi Shari.  Thank you for replying to my message.  I appreciate your support.  You also sent me an instant message but I don't know how to reply to it so I'll just reply here.  My son's neurologist is Dr Ichord at Children's Hospital in Philadelphia.  However, I think you said that you're 29 and I don't know if you can see a CHOP doctor.  I hope you're doing well...

Thanks again.  Patti

Hi I am also new at this computer stuff.  Thank you DJ for creating this wonderful web site.  I have learned so much from it all ready.  Having a 25 year old sister with this disease is hard, but reading everybody's advice is so helpful.  Thank you again.
M Bodiford[/flash][url][/url][flash=200,200][/flash][flash=200,200]

Hi, how are you? I was just diagnosed with MM in 2003. I had bilateral strokes in July. I just wanted to say thanks DJ ;;D ;;D

WOW I see all these people from Houston.We live in Houston too. My daughter had her surgeries in 2000. She was at Hermen down town.Her medicine Dr. is Dr James Grotta and her surgen was Dr Kim Dong.He was the best.Dr Grotta said he has moved to New York. E-mail me any time carols3471@sbcglobal.net

I am from Houston, too. You think there's something in the water down here???  [smiley=wink2.gif]

I had my surgeries at Texas  Children's 14 years ago. Please feel free tocontact me if you want to... I feel like no one knows I am trying to communicate with all of you. I can't talk to my friends or family much about having mm because I think it gets OLD to them. They don't realize how much it still affects my life. I am a bit frustrated...

Sara

Sara wrote on Mar 16^th, 2004 at 2:35pm:

I can't talk to my friends or family much about having mm because I think it gets OLD to them. They don't realize how much it still affects my life. I am a bit frustrated...

Sara - I hear ya!  Having MM is a big part of my life, and will always be.  I get the feeling sometimes that my friends and family are sick of hearing about it!  -Shari

Dear Sara and Shari,

I always like to hear about mm'ers.  My sister has mm and I cannot get enough infor.  We need to get her better.  I will always be there for you

Janice

Thank you, Janice!  [smiley=hug.gif] This web site has been such a blessing!!

-Shari

Janice and Shari and EVERYONE:

Thank you for being here!   ;;D ;;D ;;D

Sara