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Moyamoya Get Together? (Read 11633 times)
DJ
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Moyamoya Get Together?
Mar 7th, 2004 at 12:29am
 
There's been a lot of "behind the scenes" talk recently on the Moyamoya.com webiste about having a meeting of Moyamoya sufferers and supporters from around the world.

If you all think it's something you would be interested in doing, I would be interested in setting something up in a location that would be fairly easy for everyone to get to.

How cool would it be to meet other suffers and supporters from around the world who have been through the exact same feelings dealing with such a rare disease?

Anyone up for meeting other's from around the world who have experience dealing with Moyamoya?  I know I am.....

If you are interested in meeting other Moyamoya families, please respond to me personally via email at convention@moyamoya.com, or respond to this thread letting me know you'd like to meet and share experiences with other Moyamoya families from around the world!

All the best!
DJ
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LisaH
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Re: Moyamoya Get Together?
Reply #1 - Mar 7th, 2004 at 12:41am
 
I'm in wherever/whenever!!! Smiley  I would even offer to host (I'm Martha Stewart without the prison bars  ;Grin)  but I'm not sure how many people would want to visit Illinois considering all the Easterners we have on the board.   Let me know if I can be of any help.  Let's get this 1st annual Moya Moya Convention rolling! 

Thanks DJ! Smiley

Lisa
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Annica
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Re: Moyamoya Get Together?
Reply #2 - Mar 7th, 2004 at 2:43am
 
A Moyamoya Get Together would be fantastic! Im not sure it would work for us to go overseas but I would love to meet other children and their parents and also meet grown ups who can tell me what its really like to live with the worries this disease comes with.
My daughter doesnt really know that much English but kids always know how to communicate anyway!
Its a grest idea DJ and if you set something up we would sure try to be there!

Annica and Louise  Wink
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Re: Moyamoya Get Together?
Reply #3 - Mar 7th, 2004 at 8:19am
 
Hi Deej,  Smiley

I certainly would be interested in meeting everyone. You all have become part of me, so to speak. I would love it!! If not for any other reason also...but to give you Dj, a big hug in person for all you've done.  Smiley

If there is anyway I can be of any help. I would be happy to.  Smiley

Thanks,
Mar
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STrantas
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Re: Moyamoya Get Together?
Reply #4 - Mar 7th, 2004 at 10:29am
 
DJ-
I would be very interested in planning a get-together "off-line" and was already thinking about places that are convenient.  I think it would be best to do something in the summer because kids are out of school then.  I would also volunteer my city!  Phildelphia is a great place to visit and there are lots of thing to do - from a visit to the new Constitution Center to the Welcome America festival held every summer.  Just thought I'd throw my thoughts out there!

-Shari
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mg12061
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Re: Moyamoya Get Together?
Reply #5 - Mar 7th, 2004 at 12:49pm
 
DJ, That would be so amazing to meet all of you.How great it would be to share our families and ideas in person.Summer would be great(schools out).We  probably couldn't travel very far so Philly sounds good too.We live in NY (which is also a great place to visit and live the Adirondacks and Lake George are wonderful).
Mary Grace
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Re: Moyamoya Get Together?
Reply #6 - Mar 7th, 2004 at 3:04pm
 
I would love to get together with everybody but from the sound of these posts i am clear across the country from most of you, im in oregon so im not sure i can travel that far but i definitely think it should be located where most of you are  Roll Eyes
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Laura
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Re: Moyamoya Get Together?
Reply #7 - Mar 8th, 2004 at 1:22am
 
I think this is a great idea.  I live in Monroe, Louisiana.  I don't believe I have seen anyone else on the message board from Louisiana, so I would be willing to go elsewhere.  I would be willing to help with anything that I can.  Maybe we all could get some answers from others and also help others with our own wisdom with this rare disease we all share! Roll Eyes Roll Eyes
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JZM
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Re: Moyamoya Get Together?
Reply #8 - Mar 8th, 2004 at 8:38am
 
I would imagine the best location should be where the majority of the MM patients are.  It is a nice idea to do this for those that are able to travel.

Perhaps even doing more than one and with locations spread throughout the USA.
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Sara
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Re: Moyamoya Get Together?
Reply #9 - Mar 8th, 2004 at 1:48pm
 
Hello Everyone!   Smiley

I would LOVE to get together. I am in Houston, but I wouldn't mind travelling. I hope this pulls together, I am really excited thinking about it.  Smiley

So, my answer is  Smiley!!!!

Anything I can do, I will. Please take me up on that...

Hope to meet you all soon.

BTW, Summer would be great!

Sara
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Re: Moyamoya Get Together?
Reply #10 - Mar 8th, 2004 at 3:12pm
 
Hi from Iowa, would love to meet and ask a million questions.  It really is lonely out here in unknown territory.  Would be willing to travel if resonable accomodations available.  We didn't have insurance so you can imagine the expenses  we've had.  Rick and Sandy
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Re: Moyamoya Get Together?
Reply #11 - Mar 9th, 2004 at 3:21pm
 
    Hey everyone this sounds great but if traveling is a problem a thought might be to hold more than one.  Lets face it many of us are not in the greatest financial shape because of our MM friend what  it's done to our earning ability not to mention medical costs.
     Let me know if I can be of some help.  I live on the Jersey shore which is great in the summer.

Stay well, all of you  Tom G.
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PatM
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Re: Moyamoya Get Together?
Reply #12 - Mar 11th, 2004 at 7:13am
 
Hi everyone.  I think a get together is a fantastic idea.  Especially now that I have read some of the really terrible experiences that people and their families have had with this devastating illness.  I am in NOrthern NJ, about 25 miles from New York City. but would be willing to travel if necessary.  So. let me know.  Pat M
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Rena
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Re: Moyamoya Get Together?
Reply #13 - Mar 12th, 2004 at 9:08am
 
Great Idea

Depends on where and when, but I would do my best to get Tyler and I there.  ;Grin
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Re: Moyamoya Get Together?
Reply #14 - Mar 15th, 2004 at 7:25pm
 
i just joined this family and would be very excited to meet everyone. within the last three days i have found amazing friends that ive never met. lets meet face to face.
babyblue
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PatM
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Re: Moyamoya Get Together?
Reply #15 - Mar 22nd, 2004 at 9:15pm
 
Smiley Smiley  Hi everyone!  Well, I have comunicated with DJ already about my idea to have a get together with fellow "Moyamoyers" (this is a new phrase that I have coined....) And, this is my plan....on SUNDAY, AUGUST 29TH, 2004, from 11:30am until 5:00pm, all "moyamoyers" and their families are invited to my home in Woodcliff Lake, New Jersey (about 25 miles from New York City) for a fantastic brunch, and I mean fantastic.....bagels, lox, omelette stations, eggs, bacon, sausage, croissants, fruit salad, pancakes, french toast.....basically, the works!!  This would be rain or shine.....I will have a tent set up and tables anc chairs, etc.  I have just 2 conditions....First, I will request that each person who is attending, including any children, pay $2.50 to help defray the cost of the brunch.  Second, I would ask that each person bring one non-perishable food item or household supply item that would be donated to the Helping Hands Food Pantry at my local church, Hillsdale United Methodist Church.
I live in beautiful, country like Woodcliff Lake, New Jersey on a 1 acre property.   Within 2 1/2 miles of my home are both the Woodcliff Lake Hilton and the Park Ridge Marriott, as well as a Holiday Inn in Montvale, New Jersey.  I will check out hotel rates and hopefully, if there is enough interest, I will be able to work out group discount rates (like they do for weddings, bar/bat mitzvahs, etc.)  The Hilton and the Marriott also have pools, health spas/workout rooms, etc. 

This day will coincide with a day of celebration of my recuperation from EDAS surgery.  I have my first surgery on the right  side of my brain on April 16th, and the second for the left side in mid to end of June.

I am very active in my local church and serve as the Vice-Chairman of the Board of Trustees.  Our local church service begins at 10:00am and then, in lieu of our usual coffee/fellowship hour after worship service, I am inviting our entire congregation for brunch and fellowship.  The congregation of my prior church, Christ United Methodist Church in East Rutherford is invited as well.  Also, my friends from high school, drum corps, and law school, and their families will be there as well. And, we will have many singing groups and choirs performing.....it will be a very special day.....  I hope many moyamoyers and their families will be able to come....

I am also interested in starting a charitable, tax-exempt organization for moyamoya sufferers and their families to help raise awareness of this illness and the devastation it can cause..... My thoughts also include starting a fund for those people who can't afford to travel for necessary surgery or can't afford the surgery itself.......I will announce more about it at the gathering on August 29th.  I hope all of you wll come.....continue to have a positive attitude and faith in God or whatever higher power you believe in.....Let me know if you wil be coming and how many members of your family will come. 

As an aside, New York Presbyterian Hospital and the Neurological Institute is only a 30 minute ride from my house.......My neurologists Dr. Ralph Sacco and Dr. Ji Chong (212) 305-3710, and my neurosurgeon is Dr. E. Sander Connolly (212) 305-0376 (his secretary's name is Pat and she is extremely nice and knowledgeable).  Perhaps, those of you who need a consultation or second opinion can schedule an appointment with their offices at the Neurological Institute to coincide with the time that you will spend here attending the moyamoya brunch......So, please e-mail me or post any responses.  God Bless all of you.

And, everyone please e-mail my brilliant sister, Diane Main, and tell her that she and her husband, Alex, and my beautiful 2 month old nephew MUST COME......P.S. to my sis-----Peak----Patti and the Speaketones will probably be making a guest appearance.......so, be there, girl.....

Smiley Smiley Smiley
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DianeMain
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My sister, PatM, has moyamoya.

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Re: Moyamoya Get Together?
Reply #16 - Mar 22nd, 2004 at 11:59pm
 
Hmm.  That could be a tricky one.  Let's see whether I get a summer fellowship  Smiley and how much I might be able to sock away from that . . . and then let's see if we can convince my employer that I can get away with not being at the mandatory staff inservice days that precede the start of the school year!  (I am a teacher.)  Smiley

And let's see how willing Alex and I are to bring a . . . let's see, he'll be 8 1/2 months then? . . . baby on an airplane from San Jose to New Jersey!  Smiley

You better start working on Alex too!     Smiley

Love,
Diane
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Re: Moyamoya Get Together?
Reply #17 - Mar 23rd, 2004 at 8:27am
 
Pat - I think this is a fantastic idea! Good job coming up with an idea.  For those of you in the Philadelphia area - if you would like to arrange a "bus" of people to travel there together please e-mail me...It's only a couple hours away.  Thanks! (TAvngr1@aol.com).

-Shari Smiley
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LisaH
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Re: Moyamoya Get Together?
Reply #18 - Mar 23rd, 2004 at 4:06pm
 
Hi Pat,

How wonderful of you to offer to do such a gathering!  Are you sure you are going to be up for it so soon after your second surgery?  Just worried about you and don't want you to overdo it!   I don't know yet if I will be able to go although I would really like to.  Still kicking around the idea.  I was thinking I would probably drive there (13 hrs. not too bad) but would like to know what airport I would go to should I decide on flying.

Thanks,
Lisa
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Sara
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Re: Moyamoya Get Together?
Reply #19 - Mar 23rd, 2004 at 5:14pm
 
Man:

I would love to be there. I am getting married on 9-4-04, so I don't know if I can afford it, or work it in. Is their anyone in Texas (I am in Houston) that may want to go together? I also need to know which airport is the closest. Thank you so much for giving everyone this opportunity, PatM. You guys in Texas, feel free to e-mail me directly.

Sara   Smiley
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DianeMain
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Re: Moyamoya Get Together?
Reply #20 - Mar 23rd, 2004 at 5:54pm
 
The closest airport is Newark, NJ (EWR) . . . and I know that Continental has direct flights between IAH and EWR.  There are other NYC airports, such as JFK and LaGuardia, but Newark is the most convenient and also the easiest to drive to and from in the area.  At EWR, you're already in NJ, not too far from a highway that leads right to my sister's place, pretty much.

As for me, I checked with work, and I HAVE to be at work the week before this event and the Monday after, so it looks like we won't be able to make it.  Smiley

Diane
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"Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us." -- Bill Watterson (1958 - ), cartoonist, "Calvin and Hobbes"
 
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DianeMain
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My sister, PatM, has moyamoya.

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Re: Moyamoya Get Together?
Reply #21 - Mar 23rd, 2004 at 5:58pm
 
Incidentally, LisaH, the member map shows that you are near Chicago . . . either an ambitious day's drive or a two-day drive if you want to be sensible.  Are there any reasonable flights?  I have driven cross-country, when I moved out here.  It's not a trip I would make for just a weekend.

But hey, I don't want to discourage you from attending!

Diane
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PatM
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Re: Moyamoya Get Together?
Reply #22 - Mar 23rd, 2004 at 7:54pm
 
;Grin ;Grin  Don't worry everyone----I will be fine after my 2nd surgery and I will be having alot of help at home and from my community of faith----so, although I may be partially bald----(or maybe I'll get a mohawk.......)what the heck?  The caterers are already booked....the singers are working on their songs, etc.  Now, I will check with the Woodcliff Lake Hilton and the Park Ridge Marriott to see who can give us the best rates and will keep you all posted.  My sister is right,  Newark Airport is the closest.  If you want to check out MapQuest from Newark Airport, my address is 133 Rose Avenue, Woodcliff Lake, New Jersey 07677.  Will keep you all posted and will get phone numbers on the Message Board for the hotels as soon as possible.  Be well....PatM

P.S. Peak-----I can't believe it; you can't come----This is going to be the weekend blowout of the century----it will even beat out Mom's 60th birthday bash.  On Saturday, the 28th, all the drum corps people will be at my house for a mega reunion......IM me ----we need to talk, allright?? Love, Patti
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PatM
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Re: Moyamoya Get Together?
Reply #23 - Mar 26th, 2004 at 4:40pm
 
;Grin  Hi everyone----hope that you can all come to the get together in August.  I see that alot of people are viewing this site, but only a few responses so far.....this promises to be a big event.....i would just like to know how many people are planning to attend from each family---how many adults and how many children----so I can plan the food appropriately......Hope to see you all there in August...you can post on this site or e-mail me directly at psmartinlaw@aol.com....Be well.  PatM Smiley Smiley Smiley
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