Hi everyone!!   [smiley=wave.gif]
Just wanted to let everyone know that we have pinned down the dates for our trip to Las Vegas.  The dates will be Thursday, August 11 - Monday, August 15 Mark those dates on your calendar and go ahead and ask off work.  WooHoo!  I will get back with everyone on the hotel information as soon as possible.  I hope that you all can make it out for this.  I'm going to do a block of 20 rooms.....does that sound like enough or should I make it more?  Any ideas?

Michelle

Sounds good!  Count me in - can't wait!

-Shari

Assuming that we want to stay on the strip in Vegas, then I have 2 room possibilites that I would like to receive feedback on.  The other hotels that I checked about were around $200 a night.    [smiley=yikes.gif]

The hotels are:

• Circus Circus  
  The cost of the hotel would be
  Thursday - $55.00
  Friday & Saturday - $112
  Sunday - $68.00
  This amount includes a 9% sales tax
  The total cost would be $347.00.
  The hotel is very nice for children as there is an Adventuredome there and lots of things for children to do.  
  4 people per room - $86.75 per person
  3 people per room - $115.66 per person
  2 people per room - $173.50 per person
  Please visit their website at http://www.circuscircus.com/index2.php
  

• Flamingo Hilton  The cost of the hotel would be
  Friday - $99.00
  Saturday & Sunday - $180.00
  Sunday - $131.00
  This also includes a 9% sales tax
  The total cost would be $590.00
  This hotel has a penguin area, flamingos and other birds.  It also has a a great casino and a very nice pool area where the waitresses come to you and get your drink orders.    [smiley=me&mb.gif]
  4 people per room - $147.50 per person
  3 people per room - $196.66 per person
  2 people per room - $295.00 per person
  Please visit their website at http://www.caesars.com/Flamingo/LasVegas/?A20A48CAB84GOOGLEAD1C5C2FCBD1B&
  

Remember that you can share rooms with someone else to help with the cost of the room  The more people in the room, the cheaper it will be.   Plus you have plenty of time to save.  :)
Get back to me when you can with your choice for the hotel so I can go ahead and book it the room block.  Both of these were with a block of 20 rooms.  

Michelle

Im in either way so just let me know which you decide. Cant wait! ;;D

Christy

I agree with Christy!

-Shari

Hey Michelle-

I was just looking at the calendar and the 14th is sunday not monday so i was just wondering which day the get together would be over.

Christy

Christy,

You are right.  It should be Monday, August 15th.  I corrected it above.

Michelle

MICHELLE,
          LET RHONDA AND MYSELF KNOW WHEN IT'S DECIDED. IF I CAN GET OFF, WE MIGHT BE INTERESTED.
                                                DANNY&RHONDA ELLIOTT

Just wanted everyone to know that we are still ironing out the details for the trip to Las Vegas and that it hasn't fallen by the wayside.  We will hopefully have everything worked out soon.  

Thanks,
Michelle     ;;D

Hi everyone!   [smiley=wave.gif]

We have now finalized the MM Las Vegas trip.  Just to reiterate what has already been established - the dates will be Thursday, August 11th - Monday, August 15th.Of course you don't have to stay the entire time.  Come anytime during those dates and join in anything you would like.  

There will be a "common area" available during those dates where guests can come by to visit with other people from the boards or just to come by and say hello.  The "common area" will actually be mine and STrantas' suite.  The hotel that we will be staying in is The Flamingo Hilton located on 3555 South Las Vegas Boulevard on the Strip.  It will be perfect for what we want as there is a huge gathering area with a bar space/counter and a small kitchen.  I plan on having the refrigerator stocked with some bottled water, sodas and other items.  We will also try to keep some other things stocked there as well.  If you have anything that you would like to have in this area, please let us know.  All suggestions are welcomed.  Also, if there is anything that you would like to donate, we would happily accept them.  The times that the "common area" will be open are:

• Thursday, August 11th:  4:00 PM - 6:00 PM
  

• Friday, August 12th: 10:00 AM - 12:00 PM & 4:00 PM - 6:00 PM
  

• Saturday, August 13th: 10:00 AM - 6:00 PM

• Sunday, August 14th: 10:00 AM - 6:00 PM

These times could change or times added, but for now, this is what we decided.  We felt the 4:00 - 6:00 PM time frame would be good in order for people to discuss dinner or evening plans.  Once we have our room number, we will get that out to everyone.  Here is a link to a picture of our suite.  http://www.caesars.com/Flamingo/LasVegas/Hotel/Accommodations/LuxurySuites.htm

The decision has been made that each individual/couple/family should have the choice of where they want to stay.  I have a chart of hotels in the Las Vegas area that DJ has and will add to this post once he has a moment.  The chart tells you where the hotel is located, the reservation phone number, prices, their website, and details about the hotel.  To get the details you will need to run your mouse over the name of the hotel to see the amenities.  

If you have any questions, please do not hesitate to ask me.  If I have forgotten to add anything, please let me know.

We will have some events planned for those that want to join in.  These will mostly be for dinner and evening plans.  

Please let me know if you are planning to go or have already made your plans.  I will keep a list of those that will be there.

Hope everyone can make it out for this!  It will be lots of fun, I promise!

This ought to keep you all busy for awhile.  LOL!  These are just a few (ok...more than a few) of shows and things you can do while in Las Vegas.  

We Will Rock You show to music of Queen
http://www.caesars.com/Paris/LasVegas/Entertainment/EventsCalendar/EventsCalendar.htm?SearchDay=17&SearchMonth=4&SearchYear=2005&SearchType=4&EventId=2190&dtype=8,9,10,11,12
 
"O" - Cirque Du Soliel (one of more popular & famous) - Click on link then point mouse on Entertainment and a then click down on O
Also under Attractions go to Fountains of Bellagio.  There are short videos you can play for both of these.
http://www.bellagio.com/pages/frameset_flash.asp

Secret Garden & Dolphin Habitat
http://www.miragehabitat.com/pages/index_flash.asp

Mystere by Cirque Du Soliel
http://www.treasureisland.com/pages/ent_mystere.asp
 
Cleopatra's Barge - fun nightclub
http://www.caesars.com/Caesars/LasVegas/Dining/BarsLounges/CleopatrasBarge.htm
 
The Forum Shops
http://www.caesars.com/Caesars/LasVegas/Shopping/TheForumShops/TheForumShops.htm

Purple Reign - a tribue to Prince
http://www.boardwalklv.com/pages/ent_lounge.asp

AdventureDome at Circus Circus
http://www.adventuredome.com/index2.php

Thunder from Down Under - you better see this one.  <VBG>
http://www.excalibur.com/entertainment/thunder.php
 
Jousting Dinner Show
http://www.excalibur.com/entertainment/tok.php
 
Beacher's Madhouse - you've got to read this one to believe it.  Click on special events and then Beacher's Madhouse.
http://www.hardrockhotel.com/party_specialevents.php
 
Nightclub at Hard Rock Hotel
http://www.bodyenglish.com/

Imperial Luau
http://www.imperialpalace.com/entertainment.php?subid=59
 
Karaoke Bar
http://www.imperialpalace.com/entertainment.php?subid=23
 
Blue Man Group
http://www.luxor.com/entertainment/index-flash.php3
 
Ra Nightclub
http://www.ralv.com/index_flash.php?screenres=1&href=&article=&admin=
 
Shark Reef
http://www.mandalaybay.com/entertainment/shark/
 
Mama Mia - Songs of ABBA
http://www.mandalaybay.com/entertainment/calendardetail.do?id=361

House of Blues
http://www.hob.com/venues/clubvenues/lasvegas/

Ka - Cirque Du Soliel
http://www.mgmgrand.com/pages/entertainment.asp?link=ka
 
Studio54 - Nightclub
http://www.studio54lv.com
 
New York New York Entertainment - lots of places to go to here.  Also the Dueling Piano's at The Bar at Times Square is one of the best!  Also has ESPNZone, the Manhatten Express Roller Coaster and Coyote Ugly
(a nightclub)
http://www.nynyhotelcasino.com/pages/ent_times.asp

Insanity - the Ride
http://www.lasvegas.com/attraction/INSANITY_attraction.htm
 
The Mirage - Volcano
http://www.lasvegas.com/attraction/VOLCANO_attraction.htm
 
X Scream - Stratosphere Ride
http://www.lasvegas.com/attraction/PROJECT_X_SKY_attraction.htm
 
Sirens of Ti - Mirage Hotel - Free Show
http://www.lasvegas.com/attraction/PIRATE_BATTLE_attraction.htm
 
Barry Manilow - Sorry, but he's one of my favorites
http://www.lasvegas.com/show_event/barry_manilow_show_detail.htm
 
Tony Roma's - Famous for Ribs
http://www.lasvegas.com/dining/TONY_ROMA_S__3000_dining.htm
 
Kahunaville - Island Restaurant at Mirage Hotel
http://www.lasvegas.com/dining/KAHUNAVILLE__3300_dining.htm

Rumjungle - Restaurant & Club at Mandalay Bay
http://www.lasvegas.com/dining/RUMJUNGLE__3950_dining.htm
 
Spago - Wolfgang Puck's Restaurant at Caesar's
http://www.lasvegas.com/dining/SPAGO__3500_dining.htm
 
Todd English's Olives - Mediterranean Style Cuisine
http://www.lasvegas.com/dining/OLIVES_dining.htm

Rain - Night Club
http://www.lasvegas.com/guidebook/nightlife/rain_nightclub_detail.htm
 
The Beach Night Club - This is the one I went to when I went to Vegas before.
http://www.lasvegas.com/guidebook/nightlife/THE_BEACH_nightclub_detail.htm
 
Chippendale's - Of course!!!
http://www.chippendales.com/highband/interface.htm

Men:  They have strip clubs, too, but I'm not good at picking out those things.  If you all want to add your own links to some, go ahead.  :)

Michelle

Shari (STrantas) and I are looking for one more person to share our suite with us at the Flamingo Hilton.  You will have your own bed.  We would ask that you be a non-smoker as well.  We will be making reservations on Friday and will need to have a deposit in at this time.  We will go ahead and pay the deposit, but will expect their share of this deposit.  My expectations are to have the hotel room paid for before we go.  That way it will be taken care of and we'll all know how much money we have to spend.

Please let me know if you are interested.

Thanks,
Michelle

Everything sounds great! I am trying my hardest to work things out so i will be there. Thanks Michelle and Shari for your hard work!

-Christy

Sorry it took me a couple of days to get this up here, but here is the list of hotels Michelle put together for the gathering.

RIGHT CLICK on the link below and save to your computer

http://www.moyamoya.com/LasVegasHotels.xls

If you have any problems viewing the file, let me know...

DJ

Well, I've made my reservations!  I arrive Fri, Aug 12th and leave Mon, Aug 15th.  Looking forward to meeting everyone who can make it on Friday, Saturday, and Sunday in Las Vegas!

[smiley=headbanger.gif]

DJ

:o :o :o Wow :o :o :o...
...Michelle and Shari.. you did an awesome job gathering all this information !!!  Looks great.  I am hoping things work out that Cara and I can pop over to Vegas even if its only for two days.  Cara is due to have her follow-up sometime the first part of August, too !!!!  Will be kind of wierd meeting the MM.com crowd in person after all that time just posting/emailing online.

I'll see what I can do.

tight hugs,  CarasMOM

Dear Michelle,

Thank you for arranging this trip~~~it sounds great to meet all you wonderful mm people!!  I have a few ???:  I have 3 kids (ages 22f, 19m, 15f) & I am separated from my husband.  Only 1 will be able to go into any casinos; will the other two have something to do??  I am on a budget & it looks like the shows are quite expensive for 4 people; am I being a cheapskate?  Can my oldest drive a rental (age?) since I can't drive a regular footed car? Do I even need a car or will there be any other transportation?  (sorry, I'm just really las vegas stupid~~  I don't want to tell my kids about the trip yet because they would be let down if it didn't work out because of unforeseen details)  Any answers would be very welcome~~ thanks again, deb

Deb,

I hope that you and your kids will be able to make it out for this trip.  It will be a great experience for all of you!

There will be plenty of activities for your youngest children to do while in Vegas.  There is the Adenturedome at Circus Circus.  Most of the hotels have pools that they can hang out at.  I think most of your kids would enjoy the shows if you decide you want to spend the money.  

I think you have to be 25 or over to be a driver on  a rental car.  You might want to check into that.  A rental car is not necessary.  You can get a cab from your hotel and go anywhere in Las Vegas that you want to go.  There is also a monorail there between some hotels and things in Las Vegas.  The link to the monorail is http://www.lvmonorail.com.

Here are some websites that you can visit to gather more information:

• http://www.vegas.com
  

• http://www.lasvegas.com
  

• http://www.lvol.com
  

Here are some websites for Kids Entertainment in Vegas as well:

• http://www.lasvegaskids.net
  

• http://www.kidsinvegas.com
  

• http://www.viewnews.com/2000/VIEW-Jul-19-Wed-2000/Henderson/13955155.html
  

• http://www.vegas.com/traveltips/guide/family.html
  

You should also try these websites for discount travel and package deals:

• http://www.travelocity.com
  

• http://www.expedia.com
  

• http://www.orbitz.com
  

• http://www.i4vegas.com
  

• http://www.travelworm.com
  

This should get you started.  If you have any other questions, please let me know.  I'd be happy to help.  

Dear Michelle,

Thanks for all your help with the extra websites; I'll do some checking in to them!  Another ???:  Do you have to get tickets to shows ahead of time or can you wait till you get there and decide?  I've been so "living one day at a time" for the past few years (between mm & heart probs.) that making plans so far ahead of time kind of scares me~~ but I'll give it my best shot...  thanks again, deb

Deb,

I would say that for the more popular shows you should probably get your tickets ahead of time.  I would not wait until you get out there for those.  I would also probably wait until it's a little closer to the trip as I will possibly plan a couple of things to go to if there is a lot of interest in particular events.  Let me know what shows you are interested in.

Thanks,
Michelle

Hey guys,

Just a tidbit of info . . . One of the really popular shows is Cirque du Soleil's "O".  I understand that it's sold out quite some time in advance, but I know a few of the performers who can generally get tickets pretty close to the show dates.  It's a matter of putting anyone who wants tickets in touch with my contact, you providing a credit card # and your request for a show date/time.  My contact will confirm the availability of tickets and have your tickets ready at Will-Call.  (Be forwarned - tickets aren't cheap, as they are $125 and $150 per person.)  I hear that it's an incredible show though, worth every penny, for anyone who chooses to go!

Happy planning!
Jill

Jill,

I am definitely interested in seeing "O".  It's one of the absolutely definite things I want to do there.  Please help!  LOL

Michelle

Hi Jill - Count me in too!  I did go to another Cirque show and it was fabulous.....I'm all in!!

Thanks, Jill!

-Shari

Michelle,

I was wondering if you posted about the Las Vegas get together on the mm related info/support board~~ just because there may be others that don't post on this (d.j.j.)  board or only look at that other area.  (I kind of found out about it  by accident myself because I had never looked at the jibber jabber board before)  Just a thought (sorry if you already have & I missed it! )  ~~deb

I am interested. Check out cheaptrips.com. They have good deals. ;;D

[smiley=sayyes.gif] Reservations are made, and the plane ticket is purchased. Viva Las Vegas!!

Hey, if this old fart can handle the heat, anyone can. Now get on the ball and start making plans everybody. Let's make this a great turn out!  [smiley=thumb.gif] I can't wait!

Looking forward to meeting you all.

Mar

My husband, I and two kids are coming.  If you need anything, please tell me.  I can help.  I am not teaching over the summer so I am free.  If not see you in August.

Paula

Will any children with MoyaMoya be attending?  My 10 year old son has MoyaMoya and I think it would help him to see other children with MoyaMoya.  I also have a 5-year old without MoyaMoya -- will there be any little children around her age going?  I'm from PA so this will be a long trip for us if we decide to go..

Thank you for arranging this!

Pattil647,
                I didn't realize thats where you were from, my daughter Mandy the one with MM was from Fairless Hills when she had her strokes, we took her to Hup for diagnosis in Philly, I am from Croydon, I guess I never realized it before that you live in Langhorne.
                                  Nancy

i'm asking at work tomorrow if i can get off friday so i can come out thurs through sat or sun.  not sure if holly will come or not, but i definately want to be there.  will let you all know

hillary

Hi...I am new on this site...just couldn't figure how to use this lap top...my name is "itsme". Any way I do plan to meet my MM family. I've emailed DJ a few times to ask him more questions about MM. Not to mention I was diagnosed 8 years ago and I think I better "smell the coffee" now, I was in denial because I really didn't know how SERIOUS it really was. I've been going to UCLA for yearly angiograms and the last one I recieved MM has caught up with me. To make a long story short, I decided to get one more opinion (before I came to my senses) and I went to Stanford this month and saw Dr. Steinberg....
he mentioned my MM was about 8 ( 10 ) being the worst.

So, no time wasted, I am scheduled for surgery 6/21st.
Although UCLA is great, the confidence Dr.Steinberg and his nurse Teresa and the office showed was wonderful.
I felt if any one can do it "right", it's Dr. Steinberg. Being that I've been a Diabetic since 12 was a factor that delayed my decision, but now "it's all good."

I am scared too, but I want to keep all of you posted so,I
can share my POSITIVE experience with all of you.

Again, thank you for hearing me out and organizing this
gathering. I would love to share my story with all of you and at the same token learn about others.

When I went on the internet 8 years ago there wasn hardly
nothing on MM. Thanks to DJ and everyone who is out there sharing, we know "we aren't alone."

Have a great week....again thank you!

LOL
itsme

It's been a while since we checked the site.  I want to thank all of you who answered our questions back in December when Christy had her surgery.  I finally got Christy joined up as a member.  Vegas sounds like fun!  It will be nice to meet our mm friends! We are hoping to make it.

Hi itsme, [smiley=wave.gif]

Welcome to our mm family! Thank God you sought help when you did, you're very fortunate. I certainly can understand you being scared though, but I gotta tell ya, you've got so much on your side. You're in the best hands in the world, IMO. If I were to ever need brain surgery, there's no other hands I'd put my life into than Dr Steinberg, he's a leading mm specialist and the best there is, in my book. He saved my niece's life. And don't forget, you have "us", your mm family, for support and friendship every step of the way. What a wonderful group of people.

Please know we'll be with you in spirit and in prayer, so try not to worry... You have the best doctor in the world and all our prayers... you just can't get better than that. [smiley=thumb.gif]

Please feel free to ask any questions, big or small, and keep us posted.

Mar


As an added thought... You may wanna post under the Moyamoya related information and support section you would probably get more of a response from people who've been through what you're going through. This Daily jibber jabber section is where we talk about non related mm stuff, and I wouldn't want anyone to miss your post. [smiley=wink2.gif]

Again, so happy you found us. [smiley=hug.gif]

Many thanks to Michelle, Shari, DJ, and everyone who has been working for this gathering.  This is an awesome planning.

Just let you all know, we have booked Circus Circus and round trip flights for Friday through Sunday.  Kota (10yrs, w/MM), his sister (6yrs, without MM so far), and parents are going with MM.com wrist bands.  We look forward to seeing all of you at Flamingo. ;;D

Cotadad

hello everyone,

we looked at prices for all of us to go, but it was very expensive.  so this time, i will be the only one coming, i'll be there wed through sunday morning and staying at the stratosphere.  can't wait to see you all

hillary

Hoping to be able to come to Vegas this summer.  We were thrilled that it is relatively close for us, as we can drive.  So we may be able to manage it.  Jessica is so excited just to meet other people who even know what moyamoya is!  Will be looking into reservations at the Flamingo.  Thanks for arranging this--what a great idea.

OK! Linda and I have booked our flight and hotel in Las Vegas!
We'll be staying a week starting Tuesday at the Stratosphere.
Booked through Southwest Airline Vacations - thanks Hillary!
Looking forward to seeing everyone who can make it there.

Jack and Linda

Shari (STrantas) and I still need one roommate for the Las Vegas trip for Thursday, August 11th through Monday, August 15th.  If anyone is interested please let us know.  

Michelle

Your welcome Linda and Jack...can't wait to see you there

Hillary

Hi Guys.....just booked room for Cara and myself (CarasMOM)...at CircusCircus...can't imagine a more exciting place for Cara.   We do have a full and unpredictable schedule this summer so anything could go wrong and we always seem to have to cancel...but for now Cara and I will be driving up to Vegas on Thursday the 11th and leave Sunday morning....will look forward to finally meet someone that has MM in person...and any family members that have been through this path....and to give DJ big HUG for putting this awesome website up, and to Michelle for putting this gathering together...did it so fast, making it easy for us to see all the choices in one spot.

Much HUGS,  CarasMOM

Hi everyone!   [smiley=wave.gif]

Just wanted to give an update to everyone of those that I have confirmed going to Vegas so far.  They are:

• Michelle (Seachelles)

• Shari (STrantas)
  

• DJ

• Rena

• Mar

• Paula (Jenanshanesmom) + Family (3)

• Jaredsis2 + Family (2)

• Maka4868 + 1

• Hillary

• Cotadad + Family (3)

• Jack & Linda

• Christy (Babyblue) + Mom

• Carol (Carasmom) + Cara

• Jill (Gotchlorine) + Family (Campbell & Tara)

• Elaine

Remember.....if you end up making your reservations, please let me know by either PM or on this forum that you will be coming and how many will be coming with you.

Thanks,
Michelle
:o

Well so far I just might be driving down for a day. Unfortunately Tyler won't be with me  :-[ . He's spending the summer in OH with my family and won't be back in time. However, I really want to meet y'all and just thank you face to face for all the help.

Rena

Rena,

I fixed it up above.  :)   I sure wish Tyler was going to be able to make it, but I understand.

Michelle

Hello everyone!

Those of you that are going to Las Vegas in August, MARK YOUR CALENDARS.
We will be having a group dinner on  Friday, August 12th at [color=Lime Green]Margaritaville[/color] located in the Flamingo Las Vegas at 3555 Las Vegas Blvd South.  The dinner will be held at 6:30 p.m. and we will meet in the common suite which is Shari (STrantas) and my (Seachelles) suite.  This will be our one meal as a group as the rest of the meals will be on your own.  If there is some interest in having a breakfast as a group, please let me know.

For the adults that are interested, we will go to the New York, New York hotel to The Bar at Times Square for the dueling pianos show after dinner.  And for the late owls....well there's tons of things to do and open until the wee hours of the morning.    

Michelle  
 

Thanks for all your hard work. I will be there at the dinner....is it on August 13th Saturday? I'm going to make my own hotel arrangement but I will be there to meet all of you, hopefully. I plan to be there from Friday
8/12th till the 14th.

Thanks again.
itsme

Michelle,

What day is the group dinner??

LOL!  Oops.....sorry about that, Mar and everyone.  I added the date in the original post.

Michelle

Michelle....how many are coming so far ???  :) CarasMOM

Carol,

I have a count of 29 so far counting you and Cara.  There is a post on page 3 of this forum where I showed a head count of those that I have confirmed as going.  

Michelle

I just wanted to say I AM Going to Via Las Vegas and am looking Forward to Meeting everyone with MM. I will be staying at Circus Circus.
elainecalvert@aol.com :D ::)

Hello everybody, I am going to Las Vegas during that time and staying at the Stardust.  I am new to this and would like to meet people at this event.  Would I be able to get some more information about what this get together is all about?  THanks so much.  

I'm a MM survivor and would like to meet others that have gone through similar experiences as I have.

Mahalo from Hawaii,
Melina

Hi . . . would my sister and I be able to attend some get togethers in Las Vegas with you all?  Please let me know.  Thank you so much.  

Melina

Hi Melina!  [smiley=wave.gif] Welcome to our MM family!

You certainly are welcome!! We would love to meet you and your sister. This "get together" is exactly what you said, getting together with MM survivors and their families and discussing similar experiences with this rare disease, and of course having some fun while doing it. [smiley=thumb.gif]

I would be willing to bet that never before were there this many MM survivors in one place. You'll meet some wonderful people that I'm proud to say are my MM family.

Our meeting place is at the "Flamingo." I'm not the one with all the details, that would be Michelle or Shari. I know they'd be more than happy to give you any info you'll need. I just wanted to welcome you and tell you that I'm looking forward to meeting you there. :)

Mar

Thanks Mar for the assist.  I've been really busy at work with my boss' new promotion to a VP and his boss being in the office this week.  I can't wait for our time off for the holiday on Friday and Monday.  

Of course Melina!  You are certainly invited to attend with as many people you would like to bring!  In fact all can attend and we hope to get as many people with MM out there!  This is going to be a great informative event as well as a fun one.  

Please feel free to send me or STrantas (Shari) a private message for any details that you may need.  All the details are posted throughout the this forum, but any questions you have we are here to answer.

Michelle

Just a thought… Has anyone contacted the local media in and around Las Vegas, to see if we could get any possible coverage?? Like, TV, newspapers, or radio stations?

Mar

I could do that, Mar, unless it's something that DJ should do or would rather do.  Of course, I haven't seen him around in awhile as I know he is working graveyard shifts.  I could at least get him editor names for him and news directors.  I have all that access with my work through a program called Vocus.  

Michelle

I was just thinking, wow, what a great story... a rare disease, brings a close group of survivors, friends and supporters from all around the country all together from a website, "moyamoya.com" to Las Vegas. Someone just may be interested in a story like that.

Mar

Hi everyone!   [smiley=wave.gif]

Just wanted to give an update to everyone of those that I have confirmed going to Vegas so far.  They are:

• Michelle (Seachelles)

• Shari (STrantas)
  

• DJ

• Rena

• Mar

• Paula (Jenanshanesmom) + Family (3)

• Jaredsis2 + Family (2)

• Hillary

• Cotadad + Family (3)

• Jack & Linda

• Christy (Babyblue) + Mom

• Carol (Carasmom) + Cara

• Jill (Gotchlorine) + Family (Campbell & Tara)

• Elaine Calvert + 3 (daughter & 2 grandchildren)

• Melina (maka4868 + sister)

Remember.....if you end up making your reservations, please let me know by either PM or on this forum that you will be coming and how many will be coming with you.

Thanks,
Michelle

Hey Michelle,

I spoke with DJ yesterday, and he loves the idea of notifying the media about our gathering.  He was fine with you moving forward with it.  If you do, and if you'd like any help, please let me know.  You'll just need to steer me in the right direction, as this is definitely not my area of knowledge!

Thanks for all the work you've done on the Vegas trip . . . can't wait to meet those I've not yet met!

Big hugs,
Jill

i'll help in any way i can as well.

Hillary

Hello All:

I am absolutely terrible at all the smiley stuff.   :o   My husband and I are so excited about meeting moyamoyans. We spoke with DJ years ago before his first surgery. Our son, Brian, is a 5 year survivor - 3 STA-MCA's with Steinberg (God Bless Him)' Thank you so much for putting this together!!!!!

xoxo  Dennis and Kathy

Hi Kathy!!   [smiley=wave.gif]

Soooooooo glad to see your post!  Are you, Dennis, and Brian going to be able to make it to Vegas for the get together??  That would be SO awesome!!

Let me know,
DJ

Hey DJ:

We wouldn't miss this for the world!!!!!!!! Takes us less than 5 hrs. to get there from Phoenix. My, how thgis site has grown. I hope you're very proud of yourself.
Can hardly wait to see you and some other old friends.

Later..............Kathy

Just wanted to give an update to everyone of those that I have confirmed going to Vegas so far.  They are:

• Michelle (Seachelles)

• Shari (STrantas)
  

• DJ

• Rena

• Mar

• Paula (Jenanshanesmom) + Family (3)

• Jaredsis2 + Family (2)

• Hillary

• Cotadad + Family (3)

• Jack & Linda

• Christy (Babyblue) + Mom

• Carol (Carasmom) + Cara

• Jill (Gotchlorine) + Family (Campbell & Tara)

• Elaine Calvert + 3 (daughter & 2 grandchildren)

• Melina (maka4868 + sister)

• Kathy (Katden) + 2 (Husband, Dennis & Son, Brian)
  

Remember.....if you end up making your reservations, please let me know by either PM or on this forum that you will be coming and how many will be coming with you.

Thanks,
Michelle

For those of you that are going to Las Vegas, can you please send me your email addresses either via PM or to my aol account at Chelles4U@aol.com?  We are a month away from the trip and I would like to have it to email final itineraries and other pertinent information.  I need to have these as soon as possible.  Even if you are thinking about going, please send me your email addresses as well.  I'm looking forward to meeting as many of you as I can.  

Also, if you have any ideas, questions or concerns, please let me know.  This is a perfect time to start wrapping up things for the trip.  

Thanks,
Michelle

Hi Michelle;

Sounds like you've done a wonderful job of organizing this "Moyapalooza"  !!!! You can reach me at

kathyvanmeter@cox.net

We are so looking forward to seeing everyone.

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

P.S. We have already booked our rooms at a different hotel.

Michelle-

I sent you my email address to your aol email. Let me know if you have any problems getting it.

christy

Katden,
        That was pretty good Moyapalooza...I like it! [smiley=crackup.gif]

Thanks, Nancy. I'll take all the positive strokes (no pun intended) I can get. We are soooo excited about this trip!! Our son had a massive stroke 5 years ago in June, 3 STA-MCA's 8 weeks later in August. He just celebrated his 22nd birthday, a day our local docs said he'd never see. God is good. Our family is known for its slightly "off" sense of humor, gets us through a lot. Is your child doing well? I hope so.  :D

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

Katden,
           Mandy is doing pretty well. Our family has that same kind of sense of humor even Mandy but your right it keeps you going...whatever it takes. I was wondering why 3 sta-mcas.
                     Nancy

Just wanted to give an update to everyone of those that I have confirmed going to Vegas so far.  They are:

• Michelle (Seachelles)

• Shari (STrantas)
  

• DJ

• Rena

• Mar

• Paula (Jenanshanesmom) + Family (3)

• Jaredsis2 + Family (2)

• Hillary

• Cotadad + Family (3)

• Jack & Linda

• Christy (Babyblue) + Mom

• Carol (Carasmom) + Cara

• Jill (Gotchlorine) + Family (Campbell & Tara)

• Elaine Calvert + 3 (daughter & 2 grandchildren)

• Melina (maka4868 + sister)

• Kathy (Katden) + 2 (Husband, Dennis & Son, Brian)
  

• Brenda Kelly + 2 (Husband, Robert & Daughter, Amy
  

Remember.....if you end up making your reservations, please let me know by either PM or on this forum that you will be coming and how many will be coming with you.

Thanks,
Michelle

Looks like we will be coming up to Vegas too.  I am not sure if it will be Thurs. or Fri. but anyhow I will make our own reservations.  Are most everyone staying thurs. thru Sunday?  Just want to make sure we get to meet as many as possible.  Michelle B

Hi Michelle,

I'm not able to speak for everyone else, but my family is flying in on Friday and out on Monday.  Last I heard, DJ's flight schedule is similar to ours.  

Can't wait to meet y'all!

Jill

Hi Nancy:

Glad we have similar senses of humor.  ::) Brian had the incredible honor of being the first person Steinberg had a problem with. The first STA-MCA failed, clotted off and he almost died. Thank God he had another really good temporal artery and the next surgery was successful. Steinberg felt so bad. We just thank God that Brian has such a big head  [smiley=laugh.gif]. He has always demonstrated such courage. I want so much to be like him when I grow up.

Thanks for asking..............Kathy

Just wanted to give an update to everyone of those that I have confirmed going to Vegas so far.  They are:

• Michelle (Seachelles)

• Shari (STrantas)
  

• DJ

• Rena

• Mar

• Paula (Jenanshanesmom) + Family (3)

• Jaredsis2 + Family (2)

• Hillary

• Cotadad + Family (3)

• Jack & Linda

• Christy (Babyblue) + Mom

• Carol (Carasmom) + Cara

• Jill (Gotchlorine) + Family (Campbell & Tara)

• Elaine Calvert + 3 (daughter & 2 grandchildren)

• Melina (maka4868 + sister)

• Kathy (Katden) + 2 (Husband, Dennis & Son, Brian)
  

• Kevin (Cubbie) + LDG1040 (Lore - his sister)
  

Remember.....if you end up making your reservations, please let me know by either PM or on this forum that you will be coming and how many will be coming with you.

Thanks,
Michelle

We have planned a GROUP CONTINENTAL BREAKFAST on Sunday, August 14th at 9:30 a.m.  in the "Common Suite" which is mine and Shari (STrantas') suite.  As Shari says it will be informal and in a restful environment.  The only thing we ask is that everyone chip-in some money for the breakfast.  If you have any ideas for something you would like, please let me know.  Just make sure it's not anything we have to cook......don't think they have stoves or ovens.    :)   Shari and I will be going grocery shopping on Thursday (that is the Thursday we get out there).   :)

Michelle

COFFEE and a Mmmmmmm, good donut.[smiley=winkkiss.gif]

Michelle and Shari,

First, thanks for opening your suite for all moyamoya guests and watching out for us by offering to provide continental breakfast. How kind and thoughtful of you.

As for me, doughnuts are a weakness and coffee is required for me to function.  However, I thought maybe there might be some folks that have health issues that prohibit sugar or me who really shouldn't be eating a doughnut. So I thought maybe bagels and cream cheese and fruit?  I realize fruit can be expensive.  Maybe natural organge juice?  Only a thought.  I'm open to whatever works best for all and is easy for you.  Probably keep it simple is best. You want to have fun while in Vegas not work while in Vegas.

Hugs,

Lore

Sounds great!! Thanks for the invite. Do you know if we are still planning a dinner on Friday night?

.......Kathy

Yes, we are still having the group dinner on Friday night.  We will meet in the "common suite" which is mine and Shari's (STrantas) suite at 6:00 p.m. and head down to Margaritaville in the Flamingo Hilton.  I will post some last minute information on the site on Sunday the 7the....right here in fact for those that are coming.  

Michelle

Michelle,

I should make dinner on friday night, but the breakfast, I won't be able to. my flight going back home leaves sunday at 11am.   look forward to seeing all of you there

Hillary

Sorry guys!  But this one is for all the ladies going to Las Vegas.  Those of you that would like to go see a Chippendales show on Saturday night, please let me know by sending me a PM.  I believe there is a late show at 10:30 p.m., and I thought we could go to that one.  

If you are interested then I will go ahead and arrange to get the tickets.

Thanks,
Michelle

Just wanted to give an update to everyone of those that I have confirmed going to Vegas so far.  They are:

• Michelle (Seachelles)

• Shari (STrantas)
  

• DJ + 2 (Mom & Guest)

• Rena

• Mar

• Paula (Jenanshanesmom) + Family (3)

• Jaredsis2 + Family (2)

• Hillary

• Cotadad + Family (3)

• Jack & Linda

• Christy (Babyblue) + Mom

• Carol (Carasmom) + Cara

• Jill (Gotchlorine) + Family (Campbell & Tara)

• Elaine Calvert + 3 (daughter & 2 grandchildren)

• Melina (maka4868 + sister)

• Kathy (Katden) + 2 (Husband, Dennis & Son, Brian)
  

• Kevin (Cubbie) + LDG1040 (Lore - his sister)
  

• Irene (Itsme) + Husband

Remember.....if you end up making your reservations, please let me know by either PM or on this forum that you will be coming and how many will be coming with you.

Thanks,
Michelle

Michelle and Shari,

Since Cara and I will driving up from Phx in our suburban...plenty room...I'll bring some serving platters, bowls...and I'll get some fresh fruit at the local grocery store in Vegas for Sunday morning.  Will even have coolers in my car in case we have a full refrigerator in the suite...then when I get the fruit on Saturday..I ll get ice and keep whatever in the coolers in my car til sunday morning.   I can bring up liter bottles of drinks too from AZ...along with tons of plastic cups.

Looking forward to seeing all of you...believe it or not Cara cannot believe there are other people who have MM and been through the same operations she has.  She was asking me if everyone had a bump on the side of their heads too as one side is slightly noticable but with her thick brown hair its hidden but in the pool while her brother was taking care of her ..he noticed it and call us on his cell phone....worried that she now had one.   I said its been there since the operation.  He said "well how come I didn't notice it before?"  I finally had the opportunity to say...well thats how teenagers are ...until you have a responsiblity (like taking care of your sister)...you seem to pay more attention to details..so this weekend was the first weekend all three brothers took care of Cara at the pool for two hours and were alarmed.    I told Cara that most of the people probably just had the bypass rather than both the bypass plus the graft (the muscle flap going in to her skull making the bump).  Shes excited about being in the MM crowd....it will be a cool group picture of all the MM'ers !!!!  

Can't wait to give you all hugs,

CarasMOM

Carol -

You're such a sweetie!  That's great!

As for Cara's bump...I noticed a bump on my head after my surgery too!  Just a small bump.  People tell me that it's probably always been there!  But I swear it wasn't!
So, you can tell Cara that we can compare bumps!! [smiley=crackup.gif] [smiley=hug.gif]

Looking forward to meeting you and Cara!

-Shari

hey Shari,

Holly has noticed her head is more bumpy too and much more sensitive.  She hates it being touched at all

Hillary

Ok you all....you'd be laughing right now if you saw me.  I'm sitting here trying to feel my head and I'm not feeling a bump.  But I keep feeling something that could be bumps.  LOL!  I'm going to have to let Cara inspect my head to see if I have any bumps!  

Carol........thanks so much for the offer.  We really do appreciate it.  Can't wait to mee you and Cara!  Is it time to leave yet?  

Michelle

Carol,

I just have to tell you how much I enjoyed your post about your teenage sons taking care of Cara at the pool.  It took me back to when my son was a teenager. Thanks for the walk down memory lane.  I can relate so well!

Kevin has a indentation on his left side which has often described as a bump.  I guess Cara has started a new thing.  All the MM patients can compare their bumps.  How cute.

Can't wait to meet everyone.  Kevin is counting down the days/hours/minutes.

God Bless,

Lore  

Hey Everyone.  We are going to make it to Vegas!  There will be 4 of us; Christy, myself, our daughter and son-in-law.  We are driving from Phoenix, leaving after work Friday and staying until Monday.  We'll be at the stratosphere.  Can't wait to meet all of you.  Christy is absolutely "jazzed" about meeting everyone!   :)

Hey Jim

i'll be at the stratosphere as well as Linda and Jack.  I'll be there Wed night through Saturday night.  Hope to meet up with you

Hillary

p.s. my daughter is the one with moyamoya, she had her 2 surgeries with Dr. Steinberg last year in May, she was 9 at the time.

Hello everyone, my wife Brenda has MM, she's had 2 STA-MCA bypass surgerys.  After the first one she had a stroke in the speech center of her brain. That was on Dec.12 of 03. She had the second surgery on Sept.6 of 04.It went well, but a month after we discovered she had a staf infection. It was between her brain and skull. After six weeks of antibiodic I V 's she recovered from the infection. She's doing much better now. Our daughter is (ak) by the way. We are so looking forward to meeting everyone.
         
                                Thank You, Bobby
                                                                                     

Hey Hillary,
We are looking forward to meeting you and your daughter!  Unfortunately we'll be getting in late Friday (we'll probably miss the dinner).  My wife, Christy had two surgeries here in Phoenix in October and December of last year (2004).  Dr. Spetzler at Barrows Neur. Institute did the surgeries.

Seachelles wrote on Jul 28^th, 2005 at 8:27pm:

Ok you all....you'd be laughing right now if you saw me.

Yep!  Hysterically laughing! [smiley=crackup.gif][smiley=crackup.gif] [smiley=crackup.gif][smiley=crackup.gif][smiley=crackup.gif]

Mine is just a really small bump - noticable only to me!  I guess that comes with the territory of brain surgery!

-Shari

Does anyone coming to Las Vegas have a video camera?  If so, it would be really great if you could bring it.  I think it would be nice to have one and a video of some sort after the fact.  :)

Thanks,
Michelle

Just wanted to give an update to everyone of those that I have confirmed going to Vegas so far.  They are:

• Michelle (Seachelles)

• Shari (STrantas)
  

• DJ + 2 (Mom & Guest)

• Rena

• Mar + Guest

• Paula (Jenanshanesmom) + Family (3)

• Jaredsis2 + Family (2)

• Hillary

• Cotadad + Family (3)

• Jack & Linda

• Christy (Babyblue) + Mom

• Carol (Carasmom) + Cara

• Jill (Gotchlorine) + Family (Campbell & Tara)

• Elaine Calvert + 3 (daughter & 2 grandchildren)

• Melina (maka4868 + sister)

• Kathy (Katden) + 2 (Husband, Dennis & Son, Brian)
  

• Kevin (Cubbie) + LDG1040 (Lore - his sister)
  

• Irene (Itsme) + Husband

• Jim + 3 (Christy, Daughter & Son-in-law)

• Bobby (bhb) + 2 (Brenda- MM + Daughter)
  

Remember.....if you end up making your reservations, please let me know by either PM or on this forum that you will be coming and how many will be coming with you.

Thanks,
Michelle

I'm bringing my digital camara, but i don't have a video camara.  sorry

I can bring my vidoe camera, but we won't be there until Saturday...

my "video" camera even! lol, wheres that dang spell-check button?

LOL ... Jim

I know we'll have plenty camera's, but do we have it coordinated where we can get a group "MM family" photo? You know, when all will be there and someone to take the pic? That's what I'm hoping.

Thanks,

Mar

Hey Mar, thats a really good idea.  I bet we could find someone to take the picture.

Hillary

Great idea, Mar!  And I know the perfect place.  I've just got to figure out where it is.  LMAO!  How's that for conciseness?!?!  I will find out from my friend because he will know where it is.  I think it's either the Mirage or somewhere like that.  There's a beautiful backdrop of water.....either waterfalls or geyser like water somewhere.  Oh brother....maybe I better find out where it is.  I'll get back to everyone.  I think Saturday will probably be the optimal time to do it in the afternoon.

Michelle

Mar, Michelle,

I am bringing my camera with different attachments which has the ability to take wide angle and close and long shots.  I will be more than happy to take the group picture for you.  Also, I would like to get a group picture of the MM children and also individual pictures of the families.   If that is okay with the others.

Hugs,

Lore    

Is anyone coming to the Get-Together that lives in Las Vegas?  I wasn't sure if the member map was updated or not which shows that there is no one in the Vegas area.  But if there is someone that lives in Vegas or close by it would be great if I could use that person for a local angle to the press release that I am preparing.  Let me know either here or PM if you live in Vegas or close by.

Thanks,
Michelle

My mother (Brenda) has MM.  My dad is Bobby (bhb).
We are looking forward to going to Las Vegas. My mom has  had many strokes and has had a rough  couple of years.  She is disabled now and needs someone with her 24hrs/day. But so much better than she was. It has been a long haul. But our family has hung in there. Im sure everyone else with MM has had  tough time, too. I think it makes the person and their families stronger and closer. I know it has mine. I have to say that my mom and  dad are amazing. My mom is one touch lady. My dad takes care of my mom most of the time. And he is wonderful to her. He is the best dad and best husband in the world.  
Is there anyone from the southeast texas area going to Las Vegas? We are from Port Neches, Texas close to Beaumont, Texas.
ak
But, I just have to say

Just confirming that we will be there in Vegas also.  We arrive on Thurs. and leave on Sat.  It will be myself and my husband Eddie(moyamoya guy) coming.  I can't wait to meet everyone.  I've talked to a few of you on the phone so it will be great to meet you.  We are staying at the Flamingo.  Michelle B

Just wanted to give an update to everyone of those that I have confirmed going to Vegas so far.  They are:

• Michelle (Seachelles)

• Shari (STrantas)
  

• DJ + 2 (Mom & Guest)

• Rena

• Mar + Guest

• Paula (Jenanshanesmom) + Family (3)

• Jaredsis2 + Family (2)

• Hillary

• Cotadad + Family (3)

• Jack & Linda

• Christy (Babyblue) + Mom

• Carol (Carasmom) + Cara

• Jill (Gotchlorine) + Family (Campbell, Tara, & Campbell's Family)

• Elaine Calvert + 3 (daughter & 2 grandchildren)

• Melina (maka4868 + sister)

• Kathy (Katden) + 2 (Husband, Dennis & Son, Brian)
  

• Kevin (Cubbie) + LDG1040 (Lore - his sister)
  

• Irene (Itsme) + Husband

• Jim + 3 (Christy, Daughter & Son-in-law)

• Bobby (bhb) + 2 (Brenda- MM + Daughter)
  

• Michelle B + 1 (Husband, Eddie)
  

Remember.....if you end up making your reservations, please let me know by either PM or on this forum that you will be coming and how many will be coming with you.

Thanks,
Michelle

;;D ;;D Wow....what a group that'll be in Vegas... ;;D ;;D

I realize there is so many of us...sure will be nice annual thing...even if theres one on the east and another on the west...and maybe eventually we'll find a spot in the middle of the country for all of us to meet.

It is true we all have our lives that have its own "ups and downs"...unexpectations happen.  Cara and I do look forward to be with others who have had the rarest thing happen to them ...having being touched by "MM".

...and having a very special person...with the biggest, most caring heart and devoting so much of his time making a special place available for all of us from all walks of the country...meet online.  The words "thank you" still isn't enough to express how much this website has meant to us !!!  It is simply awesome.  

;;D ;;D
Thank you, DJ  
;;D ;;D.

CarasMOM

Cara,

I think this will become an annual thing now.  I intend to at least plan one every year from now on with some help of course.  Shari has done such a tremendous job in helping me with this with her ideas and other help.  As have most everyone that is going with offering help and so forth!  Let's not forget Jill who has been tons of help as well.....and then there's DJ who without him we would not be here today.  

I think that it doesn't matter where it is held as long as people show up and can get together to start making awareness wherever we are.  I'll even start taking suggestions now for the next one.  That way there is plenty of time to plan and make it even more special next time.  I've been given some ideas about planning for next time and think that while we are out there, we can try to come up with ideas on how we can plan it around a doctor's conference on neurology....don't you think?  I've been looking into that very thing.  Or something dealing with brain diseases.  Also, I think it would be good to have it where someone (within our group) lives in that area....gives a local story angle to a BIG story on moyamoya.  

Anyway.......just some food for thought....   :)

Michelle -

Thanks for the props, but I think that you deserve the most thanks!   :) ;) :D ;;D  I did nothing more than give ideas!!

-Shari

Michelle,

I really wish I could've made this year's get-together in Vegas; however, due to some challenges I'm facing with my recovery, it is impossible.  :-/  Nonetheless, your, Shari, Jill, DJ and everyone else's efforts in planning this event is very much appreciated, and I'm sure many like me are looking forward to joining all of you at next year's event!   ;;D

The idea to have it the same time/near a neurology conference is a superb idea!  [smiley=thumb.gif]  I got so excited that I started to look online for any information....  I'm not sure if you already found these, but here is what I've found so far...

The American Academy for Neurologists are planning to hold their 58th annual meeting in San Diego, CA, April 1-8, 2006. http://am.aan.com/presenter/portal/  or http://am.aan.com/.  

The American Association of Neurological Surgeons is holding their annual meeting next year in San Francisco, California on April 22-27, 2006.
http://www.aans.org/library/search.aspx?SearchTerm=2006+AANS+Annual+Meeting

http://www.aans.org/annual/2006/AN06ExhibitorPros.pdf

It also looks like their AANS/CNS (Cerebrovascular Section) is planning to hold its 2006 Joint Annual Meeting of the AANS/CNS Cerebrovascular Section and
The American Society of Interventional &
Therapeutic Neuroradiology on February 17 - 20, 2006, Caribe Royale All Suites Resort & Convention Center in Orlando, Florida.  

http://www.neurosurgery.org/sections/Section.aspx?Section=CV&Page=meetings/2006.asp
"The purpose of the AANS/CNS Cerebrovascular Section is to advance education, research and patient care in the area of cerebrovascular disease. Through our activities and educational programs, we strive to promote awareness among all neurosurgeons of opportunities for clinical practice and research in the area of cerebrovascular surgery."  Wow..maybe we can somehow get one of our cases in their newsletters...

The Congress of Neurological Surgeons will hold their 55th CNS Annual Meeting in Boston, Massachusetts on October 8-13, 2005 at the Hynes Convention Center.

And...last but not least, the World Federation of Neurological Society will be holding their annual conference next year in  Mumbai, India on January 26-29!  ;) http://www.wfns.org/what.php

I'm sure there are many more out there...and starting to plan now for next year will definitely be an advantage; however,  I know you're focusing on this year's event which I know will be a blast! ;;D  Please let me know if I can be of any help to you for planning next years...I'm here for ya'  ;)

Thanks again for everything!

Take care,
Shan

p.s.  Please let me know if this sort of post should be PM'd to you instead of posting it here...I know it's kind of long....

I need email addresses from the following people that are going to Las Vegas.  They are:  

• Mar
  

• Itsme

• and Jenanshanesmom
  

 I need them in order to send out the itineraries in the next few days.  

Thanks so much!  

Michelle

Is it too late for me to try to attend with my family?  If not, I'm looking for help with hotel/airline info.  I live on the East coast.  Where are the families with children staying?  I would be bringing my 11-year old with MoyaMoya and my 5-year old.  Thanks....

It's not too late at all.  I'd be glad to help you.  I sent you a PM.  Also, if you want to email me directly, just email me at Chelles4U@aol.com.

Michelle

I am heart broken. I had been looking forward to finally meet some of the wonderful people on here, but am now unable to attend.

Maybe next year?

Rena

ohh Rena,

I'm sorry that you can't go.  I was looking forward to meeting you.  I have enjoyed talking to you in the past.  Hopefully we will meet soon.

Hillary

Hi Guys...to all thats going to vegas...since Cara and I are driving up...thought we'd bring whole bunch liters of sodas, bottled teas, juices or punch....I was at the store today trying to figure among all the choices.  It would be easier if I had an idea what your favorites are.   Im a diet coke fan, love the diet lipton tea, too.  Will bring several flats of water bottles, too.  

Dr.Pepper, Mountain Dew, Pepsi (any flavor), Cokes (any flavor) , Lemonades, .....etc.   I can bring little bit of each but would prefer to bring more of something if whole bunch of you drink the same thing.    No big deal...just wanted to stock up the suite accurately in the "soda" department.

Looking forward to meeting you all !!!!  

Carol  (CarasMOM)
feel free to PM me or to my email  ck.mcwilliams@cox.net

Ummmmm . . . diet pepsi's my favorite!  Great idea to throw it in the car, Carol - thanks!.  I'd be happy to make a donation to help the cause.

Jill

Hi Carol,

How thoughtful of you.  Since it is around 104-107 plus degrees in Vegas, bottled water sounds like a great idea.  I heard a bottle of water sold on the streets of Vegas cost $3.00.  Wow, I'm in the wrong business!
I too am a diet coke person.  Kevin drinks water or sometimes 7up or something without caffeine. I too will be more than happy to assist with the cost.

Again, thanks for your thoughtfullness. Can't wait to meet you and Cara.

Lore

[smiley=beer.gif] LOL... just kidding. I too want to thank you and let you know I'll chip in also.

Mar

Cara,

I too am with Mar....I'll take beer.  LOL!  No really, I am a diet caffeine free Pepsi person, but will drink anything that is caffeine free.  When will you be getting to Vegas?  Shari and I will be going to the store on Thursday (I think we'll go to Costco) and getting bottled water, more sodas, and munchies.  Also, I will be willing to contribute some money for your efforts.  :)

Michelle

Michelle.

Cara and I will leave Phx - Thursday morning...about a five to six hour drive up to Vegas.  I will input your phone number on my cell and text you when we get there.  

I'll give you a list of what I got on Monday or Tuesday before you leave.   I'll probably bring three or four coolers.

For those who drink beer, wine or mixed drinks...we can pick up your favorites in Vegas.   I have three teenage boys....I've been keeping our house without any alcohol other than knowing what we have on hand.   So will refrain from getting anything with liquer in it until in Vegas.  ;;D ;;D ;;D...don't worry Mar...you'll enjoy your favorite brew, too.

;;D Carol

Carol -

You are awesome!  Thanks so much for doing this....I'm a fan of water, iced tea and Diet Coke.  Of course, I'll also contribute to your expenses!

-Shari

Hi Carol:

Brian, Dennis and I are driving up early Friday morning.
Can we help in any way? We are so darn excited! We have to fly Brian home Saturday night as he has to work on Sunday. I hope everyone is prepared to deal with my emotional state  ::) We social workers can ber so darn weepy!

........Kathy

Okay, I admit that this is really late, but I just booked a Las Vegas trip for my son with MoyaMoya and my husband.  I would have loved to come too with my little girl, but I'm staying home to watch the pets.  We have 4 dogs and three cats and no animal sitter for next weekend.  Oh well, it will be a nice bonding experience for my husband and my son.

I'm sure some of you organized people out there have more specific information about the trip than I do, so if you have anything you can send me, please do.  My husband and son will be staying at the CircusCircus hotel.  They'll arrive at the airport Friday night a little after 11:00 pm, and they'll be staying until Monday afternoon when they'll fly home.

My son, Michael, really needs to meet other people (especially children) with MoyaMoya so he knows he's not alone.  He's 11 years old.  I hope that he gets to meet some of you wonderful people.

Thank you for setting this up DJ and thank you to Michelle as well.  

Hi Patti,

So glad to hear at least part of your family will make it to LV!  There are some scheduled activities (group pictures on Saturday and a breakfast on Sunday), and a hospitality suite at the Flamingo will be available for "drop-in" visits.  Michelle (Seachelles) will need your email address to send the whole schedule to you.

There is at least one other family staying at Circus-Circus, and other kids for your son to get to know and see that he's not alone.

Looking forward to meeting your husband and son!

Jill  

Hi Kathy...thanks for your msg..re: can you help with anything... I think Im set...Im a night person so will probably leave Arizona about 10am or so....Thursday...I can't believe it's almost here....I'm sure you won't be the only weepy one !!!  While we are all so different we all share a very rare thing.

Patty...I'm not sure the ages of everyone...but its many different ages.  My Cara while only 7....is so used to her three brothers and their friends ( Brandon almost 18 (FEB 06) , Bryan and Ben almost 16 (Nov)...she is so used to older boys and men....so your son may have an instant girlfriend !!!! (just kidding).  Simply will be the coolest thing for the kids to see adult MM'rs too.

I am most excited about a group photo of the MM people which will be awesome....and no doubt it will grow over the years.

See  ;;D you  ;;D all  ;;D soon.

CarasMOM

Anyone else going to LV require a wheelchair?  I just want to know if anyone else needs one because I don't want my husband to be discouraged if he is the only one.  I know that this is going to be hard for him to see everyone, but he is really excited.  We love vegas.
Thanks!  MichelleB

Oops forgot to add....Patty...Cara and I are also staying at CircusCircus...I thought would be cool to have a circus which I hear is ongoing in our very own hotel plus while the adults are off to the evening events I plan on doing stuff with Cara thats more geared to kids which Vegas has PLENTY of.  

One of my favorites is over by Treasure Island...the pirate ship fight...usually PACKED outside...and my boys suggest I take Cara to that one.   ;;D

I think another family with a son and daughter is staying at CircusCircus too.  

See you there.

Carol  

Hello Patti, Carol and others,

We will be staying at Circus Circus from Friday through Sunday.  My 10 years old son, Kota (Kotaro), has MM.  His parents and sister (Sanako, 7 years old) are going as well.  Looking forward to seeing all of you.

Cotadad

Hi MichelleB....

...looking forward to meeting you.  Neither Cara and I are wheel-chair bounded but I almost was due to my B12 defiency complications...not including my diabetes.  My dad was in one for the last few years of his life...and Cara sat in his lap while he wheeled around misses him dearly...and shes very attached to those who are in wheelchairs...when she sees one..she says I miss grandpa (died Jan 05)...so she'll be touched to see someone in wheelchair in our group...really.   Looking forward to meeting you.   Come to think of it I'll be the only one thats deaf but I'm just too excited to even think about it...and want to be there with Cara and we want to hug everyone for being there for us online all this time.

Tight HUGS,  Carol

Thank you to everyone for helping welcome my husband and son to the Las Vegas trip.  I hope you all have a wonderful time.  

Patti

Seachelles, Shari, DJ,

I just mailed a box filled with some "goodies" from Hawaii for everyone who will be attending the get-together this year via UPS Priority Mail, which they told me will take 3-5 days...(I'm hoping it gets there by the Saturday Continental Breakfast in your suite).  It is being sent to the Flamingo Hotel in your name, Michelle.  I will PM you a tracking number as well.

I hope you all enjoy yourselves and have a great time...I wish I could be there!

Enjoy the goodies.... ;)

Take care,
Shan

Hi All:

I have so much work to do this week compressed into 4 days. Am training new social workers. They had to listen to my mm tales at lunch today. I can hardly wait til Friday!!!!!!!!!!!  Anticipation is one of my favorite things.

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

I CAN'T WAIT ! ! ! ! ! !  Though, you're right Kathy, the anticipation of the weekend is wonderful!  Counting the days guys . . .

Hugs to y'all,
Jill

I have a question... when I get to the Flamingo, how do I find the common suite?? I won't have a computer to check what the room number is after you guys check in. Who's name do I ask for?? I know Shari's last name, but not Michelle's. Or do I ask, where's all the occluded brains meeting?? hehehe

I know... [smiley=duh.gif] I'm a dope, but I'm getting dopier cuz I can't sleep. I'm so excited I'm about ready to bust!!

Everyone have a safe trip! Can't wait to meet you all.

Mar

Hey Mar -

If you print out the itinerary you have a couple of cell phone numbers on there.  I'll also PM my cell phone number.

Michelle's last name is also on the itinerary.

-Shari

Mar,

Did you get the itinerary that I sent out?  I believe it has my last name on it.  However, I will be getting in on Wednesday night and will call either Jill or DJ so they can get the suite number to everyone.  Also, the room is in my name.  Let me know if you find the itinerary.  

Michelle

Thanks !!  Yep, I found it, but just didn't read it. [smiley=duh.gif] Well, it isn't normal to be this excited. I'm just not thinking. I have Shari's number entered in my cell, so I feel better now...lol

Thanks! See you all soon!!

Mar

Hi CarasMom and KotaDad,  Thank you for the nice welcome.  I hope my husband and my son get to meet you at CircusCircus.  

To All, did you ever determine how we'll (actually you'll) all find the common room?  Did you decide that you should call the phone numbers on the itinerary?

Thanks.

Patti,

Yep, all the info is on the itinerary. The names, phones numbers, etc. I just neglected to read it, like a dummy. I'm way too excited about this trip. I can't wait!!!

I'll be so tickled to meet your son and hubby. It's a shame you can't come. I live just minutes from you guys. (Fairless Hills) Infact, I may pass your home every day for all I know. So, we'll have alot in common. Small world, huh?

Mar

I am so jealous of and HAPPY for all of you who can go! I wish I could be there!! With the new baby and Scott (he had a heart attack on the 4th of July), there is just no way... I hope you guys do this again so I can be there!! All my love!!

Sara

Hi Sara,

Oh my gosh!! I'm so sorry to hear about Scott. That's terrible. I hope he's doing better now. Please tell him he's in our prayers.

We would have loved if you all could have made it to our first gathering. We're already talking about an annual event, so let's hope you get to go to the next one. I personally can't wait to see your precious li'l girl. Give her a hug for all of us.

Again, our best to Scott.

Mar

Thanks Mar!

We are hanging in there. He had a double bpass surgery on the 6th of July. He will be driving and back to work soon. It is just weird because I sorta feel like he has the same problem I do, except it is in his heart...

Anyhoo, I am sure I will attend if this becomes an annual event! I will email you a pic of Abigail. I sent one to DJ, but it isn't on the board yet.

Ya'll have fun!!

:) Sara

Sara....our prayers for Scott that he continues to get stronger...sounds like he has.  And I am sure we'll have this event annually.  It may switch on each side of the country so those back east don't have to go as far....Im sure DJ will post pictures no question about that.

Michelle/Shari...I picked up two sizes plates and 16 oz cups at Costco...will get the liter sodas tomorrow then I'll email one of you the final list. ;;D of what I got.

Also have some cheese dips, veg dips, mexi-dip that I will bring up, too.

;) Carol

Hey Everyone,

I'm leaving today after work to catch my flight.  I'm staying at the stratosphere close to Linda & Jack who are already there.  I have a copy of the itenery with me.  If anyone wants my cell number just PM me and I will get it to you.

Can't wait to see you all there.

Hillary

Hi everyone!

I'm off to the airport.  See everyone when they get there.  Shan,  I'll check for the package.  Thanks a bunch!

Michelle

[smiley=cool2.gif] [smiley=me&mb.gif] [smiley=shore.gif] [smiley=bloos.gif] HAVE FUN & ENJOY!!!  [smiley=wave.gif] [smiley=wink2.gif] [smiley=clown.gif] [smiley=gocrazy.gif]

I cannot contain my elation [smiley=laugh.gif]
I have a planned vacation
I'm going to Las Vegas, the best of the west location.

We're crusin' to a moyamoya reunion! [smiley=sayyes.gif]
It will be a blast from the past and
fun in the sun; [smiley=shore.gif]
I'll go with the flow and keep my eyes on the prize;
same as all you guys.

I'll hit the slots; [smiley=yikes.gif]
I'm hot to trott!
I'll go out and about
just to shop! [smiley=gocrazy.gif]

I'll eat and retreat, then
max and relax;
I'm on vacation! [smiley=thumb.gif]

SEE YOU ALL IN VEGAS!!!!

Lore and Kevin (cubbie)

PS: I'm not a poet and I do know it. LOL

:) Lore or was it by Kevin...

...a poet or not...I enjoyed it  ;)

This post alone has been viewed so many times...probably the most viewed one.  ;)

We are all excited...very.
Still the coolest thing to meet others you first met online.
So often I wanted to crawl online and thank each and everyone of you for being there when I needed it. ;;D

And now I will be able to do just that....just can't hardly wait.

I told Cara everyone will recognize her because she does look exactly like her photo...but with two big front teeth now...she laughed and said but I don't know them.  I said I haven't met any of them in person either so it'll be new for both of us.

SEE YOU ALL THERE.....a zillion of hugs,  Carol

I'm in Dallas now waiting for my connection to Vegas typing on one of these stupid kiosk things.  AHGGGGGG!!!!!!!  I'm that much closer to Vegas.  Hey Lore.....loved the poem.  Can't wait to finally meet Kevin!  Anyway.....got to board soon and I'm not liking this kiosk.  

Michelle

Hey all!  Wish I was going -- I'll be thinking of you this weekend...enjoy!  

Trina

PS - Lore/Kevin, LOVE THE POEM!

We wish you were going to be there too, Trina!  We will miss you, but will hope that you can make it next year!

Loved the poem Lore, but I think maybe you should keep the day job for now (LOL)!

I had a call from Michelle (Seachelles) about 20 minutes ago.  Her plan was taxiing (sp?) to the gate, and she was very excited that she had arrived in Las Vegas.  We all start filtering in over the next couple of days, so . . . see y'all there . . . can't wait!!!

Hugs to everyone,
Jill

I just flew back to Ga. last night from getting Mandy out of rehab, you guys are killing me I'm glad I wasn't able to read all the excited e-mails before today...I'm so jealous...I would have been there in a second if I was able. Next year without a doubt even if its in China I'll be there. I'm sure you guys are having a blast. Mar you better have more than one beer for me...D.J. will help you..HAHA  Can't wait for the pic's. Be safe everyone, can't wait to here the storys.  :-*

Hi All,

I wish that Patty and I were there with all of you.  We returned home tonight from Sturgis SD.  We will be there next year even if it is in China.  Mar -- have a beer for me

Janice