[tri-family] Re: recipe books - Michelle

----- Original Message -----
From: "Jayne and Mark Wright" <jm.wright@xxxxxxxxxxx>
Subject: [tri-family] Re: recipe books - Michelle


> <<Well then, I would like to know what they do with the money that we send
> them for subscriptions and donations.  I'm sure some of it goes to the
> newsletter and mailing fees, why don't they help with the conference?  I
> want some answers here, if anyone has some that is : )>>


I can answer some of that Michelle...Jayne :o)
Yes...some $ goes for mailing the newsletters out...although speaking as one
who works in a print shop and does mailings...that doesn't suck up huge
amounts of money :o) The idea is for the registration fees to cover the
expenses of the conference...although realistically and speaking from
experience...if the conference committee isn't allowed to charge enough for
registration fees to cover expenses that differ from conference location to
conference location (in our case on site at Disney)...then NO registration
fees don't come close to covering expenses. That's why National had to pay 9
or 10 grand to bail us out after ours...something I for one refuse to feel
guilty over!!!!!! Even with getting discounts and donations and having
fundraisers, our conference cost well over 40 grand...just the food did for
pete's sake...and registration didn't come close to covering it all! The
biggest expenses for us was food (the food was great too!) and
transportation (although in my humble opinion it was well worth it for
people to be able to travel in air conditioned comfort to the picnic and to
the sibling outing...something that we felt was a must in Florida...believe
it or not though we heard alot of flack about the costs from a certain
individual that I will not name...this individual thought we should have
school buses or veteran or shriner vans...somethings that were not available
to us...we tried for the vans believe me...but all organizations are not
always willing to offer these things at no cost or at all even had we payed
to use them. We tried to draw on our experiences at previous conferences and
improve upon things we had problems with before. For and example...traveling
to the picnic in a school bus. #1 The school buses were  not air conditioned
and my son has asthma and suffocating in the heat is not my idea of
traveling in comfort, #2 I was expected to hold my 3 year old very heavy,
very active child on my lap with no seat belt on a school bus for an hour or
close to it (NOT AN OPTION FOR ME!). I can also site some very dangerous
things that happened in the past like traveling to the medical clinics on a
handicap accessible van in Pittsburgh. When I got on that van with Devon I
thought we would be safe...I didn't know that the idiots driving the van
drove like A&&$#^@s and they also did not know how to use the wheelchair
restraints so as we careened down hills and around corners myself and others
had to maintain a deathgrip on our childs chairs to keep them from falling
over inside the van with our children in them!!!!
Yep Jayne....as I travel down memory lane here I find myself having great
sympathy for you....planning a conference is something I will never again
do...NEVER AGAIN! There is so much more involved with planning and expenses
than anyone knows unless they've done it. While we had many thanks from
parents for many things we did (like onsite medical clinics and the food,
memorial packets and the sibling outing) those in administrative positions
(not all of them...just a select few) made our lives a living hell for a
year! It was so bad that it came very close to making me never want to
attend another conference because I would have to be around a couple
individuals I had/have no desire to see or speak to  ever again! I DID
overcome that only because of this list and my desire to see you and your
children :o) I'm already fundraising so Devon and I can come this year...and
my sister is coming with us :o) The only thing that will stop us is if
another passenger jet flies into another building.
 SOoooooooo Jayne...my hats off to you...I know you guys will have a great
conference!!!!
Love,
Penny...devoted wife to Joe and "Mom" to Nick (11 yrs...lover of Harry
Potter, Pokemon, Legos, Popcorn Chicken, Pizza, cheese sticks and chocolate
icecream w/ovaltine sprinkles) and "Mommy" to Devon (AKA-Stinky Boy..or
Devonrude...Lover of Bear, Elmo and the Muppets, Stuart Little, Barney,
Blue, Rolie Polie Olie, Pooh and Co. and food in general, 6 1/2 years old
(6-15-95) !!! Full Trisomy 13 w/balanced translocation 5 and 13)...Brat and
KC (the feline children) and Snitch (Nick's new turtle :o)
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of
my dear friend Karen!)
And last but not least, check out the homepage I made!
http://www.geocities.com/penvic4/Penny_sPage.html
The stone that was rejected by the builders, has become the cornerstone
(Psalm 118)

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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