Pat posted this in the "get together" thread, but I wanted to post it in a thread of it's own so I could "sticky" it to the top of the board.

I hope as many people as possible can make it!  Pat, THANK YOU for offering to do this!   ;)


PatM wrote on Mar 22^nd, 2004 at 9:15pm:

[smiley=laugh.gif] [smiley=laugh.gif]  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=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

cant wait. me and mom will plan on being there to attend. sounds like alot of fun and we are excited about getting together with everyone. i hope others can make it would love to meet everyone.

Christy and Diane

Pat, that is so generouse of you!!!! It sounds wonderful!! I will talk it over with my family I would love to come and meet all these amazing people I have heard about.I would love for everyone to meet my little HERO Kathleen.She is quite an inspiration.This disease has really thrown her some curves but not enought to keep her down.
  What you are planning is amazing! I would love to help if I can. I have always wanted to do something to help other families but just unsure of what, and where to start.Let me know if I can do something please. I'll get back to you on the "get together" Thanks again and know that you will be in our prayers.
Mary Grace
RGrace5@aol.com

;;D  Hi everyone----just so I can get an idea of how many people intend to come to our get together on August 29th, please post a reply on this site and let me know how many of your family members will be coming---how many children and how many adults------I hope everyone can make it----I promise that it will be a really big event......you can also e-mail me directly if you prefer at psmartinlaw@aol.com.  thanks.  Be well, everyone....PatM

Hi PatM and everybody!

I would so much like to come to the get together with my daughter Louise but I probably can´t make it. In the first place it´s a long trip for us and Louise doesn´t speak English yet (though I know kids are very good at communicating with each other in spite of different languages) and in the second place we can´t make it on August 29th for several reasons.
I am so jealous of you people living on the same continent which makes it easy for you to communicate with each other and even see one another every now and then. On the other hand I´m so happy I found this site - makes me feel less lonely about this moyamoya issue.
PatM youy must be a fantastic person to offer to arrange this get together and I hope you take a lot of pictures and perhaps DJ can put it out on the board afterwards? It would be so good to see you all.

Take care everybody and have a fantastic time at the get together!!!!! I will be with you in my thoughts!

Annica  :'(

i would love to be there the kids and i always take off to Boston by ourselves for our yearly check ups and that is a dreaded trip so this trip will be something to look forward to i cant wait to meet oter moyamoya families i have felt so alone until a couple of days ago. i cant explain the excitment i feel knowing there are so many other out there i love you guys and havent even had time to really chat with yall i cant wait to meet yall good luck and god bless all of you
 

Hi Sandy---glad to hear that you and the children (how many do you have? and how old are they?) will be with us on August 29th.  There will be special events for the children, like a magician, their own jukebox and dance floor, and a moonwalk type of contraption (where they can jump around)....also, welcome to our moyamoya family.....it is a very supportive group.......we have some fantastic choirs singing (at least 5, including a children's choir that my 4 year old sings in) and, my former secretary (who is Jewish and has a wonderful voice) will be  singing inspirational songs....and we have a contemporary Christian rock band, too.  So, all in all, it will be a wonderful day.  And to all of you moyamoyers out there who are coming, please remember to bring one non-perishable food item or house hold item per person for the Helping Hands Food Pantry which is at my local church.....also, please let me know how many people are coming by e-mailing me or just posting on the website, and the names and ages.  We're using my next-door neighbors yard, too, so we will have two full acres on which to have a really great time.....I look forward to meeting all of you.  And, I have already contacted some local hotels (all within 2 miles of my house) to arrange for group discount rates...so let me know if you need accomodations on Saturday the 28th or Sunday the 29th, or both dates.......God Bless us all. PatM

Pat -

I can't believe your planning this all just out of surgery!!  You Go Girl!!  God Bless you!  Ok - give me the specifics!  What time are you calling this for?  I only live about 2 hours away so I'll probably just drive up.  Just me - my family is busy at the shore!  Thanks for the info!

-Shari [smiley=hug.gif] [smiley=bow.gif] [smiley=headbanger.gif] [smiley=wave.gif]

I think this is a very generous offer from you, especially right out of surgery.  I so very much would like to come, but funds probably won't allow it.  Just so much this year.  If there is anyway tho, there would be three of us.  I will try, but no promises.
You are amazing.  Good luck.

 Hi everyone I would love to go to this get together but I don't have any funds so I will have to miss out on this great event
Fairbanks

My mom just told me this evening that her and my dad want to come out and visit me in WV in July or August.  How wonderful it would be if they came at the end of August and we could come!!  I will check out my school schedule and run it by the folks and see what they think.  If anything I will come even if they are not able to make it.  I can't wait to meet all of you!!

Joni  ;;D

Joni---I am so happy to hear that you are coming.....and so happy to hear that your Mom and Dad are thinking of coming as well....just let me know, hopefully, by the beginning of July, exactly how many people are coming....Gald to have you as part of our mm family.....With kindest regards and best wishes.  PatM

Hello all-----I have been away for a while........If you are coming to the Get together in the northeast at my home in Woodcliff Lake, New Jersey, and you need accomodations for the night of August 28th, reduced rate accomodations are available at the Holiday Inn, Montvale, New Jersey at 100 Chestnut Ridge road, Montvale NJ 07645......Phone # is 201-391-7700, Fax # is 201-391-6648; Web address is www.holidayinnmontvale.com and e-mail is holidayinnfrang@aol.com PLEASE CONTACT THEM BY NO LATER THAN AUGUST  1ST SO THAT I HAVE AN IDEA OF WHO HAS RESERVED ROOMS.

You should ask for Francesca Giordano at x174 and say you are with the moyamoya group so that you get the reduced rate.......     Please e-mail me at psmartinlaw@aol.com to let me know that you are coming and how many members of your family will attend.....Thanks, Pat :)

Pat,

Holly and I would of loved to come but we will be in California that weekend for her 3month follow up tests and appt.

We wish you all the best and look forward to hearing how it went

Hillary