ER letter & others

February 10, 2004

To All Who Have Raised Questions:

1) There is no current official ER letter. I have written one but

it requires Dr. Harbison's signoff (which I still haven't been able

to pin her down on). However, there is a letter that she wrote

officially with her name, etc., MAGIC library article #H-43 which

details what to do in case of emergency. The RSS blue brochure also

does state about the IVs as well.

2) raises a good point re the MAGIC website - we would love

to be able to load all of the articles onto the web. The problem is

space and cost. There are 12 different divisions within MAGIC, each

with lots of information. The RSS articles alone are massive. It

is Katy and my dream to dramatically alter the way we do business by

changing our server, etc. but it will cost probably $5,000 up front

and an ongoing couple thousand a year for maintenance and stuff. It

will save in xerox costs and postage clearly, but it does take up

front costs. MAGIC is not in any financial position at this time to

make this kind of investment. MAGIC ended up spending more than

$100,000 for last summer's convention above and beyond what parents

paid in registration costs, etc. We truly simply do not have the

funds. So although I agree that it is almost stupid that we are not

doing business this way, it comes down to money.

Many of you who are new have voiced to me off line " why join MAGIC

when I can get most of the information here " and $35 a year is a lot

of money to my family. I totally understand budgets! But I also

want to remind everyone that if MAGIC no longer exists, what will

happen to us? No convention, no documents published, no unified

front pushing the pharmaceutical companies for mandated SGA coverage

of growth hormone (I haven't even told you of our success in getting

Aetna to at least now publicly " consider " covering any SGA child for

growth hormone -- HUGE step).

Our division and MAGIC is at a critical juncture. Non-profits

everywhere are hurting big time -- but ones like ours where you

are " behind the scenes " to so many families are hurting even more.

I did a last-minute 3-hour garage sale on Saturday morning for

MAGIC. I had some stuff, and on MONDAY that week, I emailed about

10 friends. Said " hey, got any toys, clothing etc that you are

ready to give to Goodwill? Give it to me/MAGIC, get your tax

deduction! " I spent maybe 4 hours total that week gathering stuff

and organizing it and pricing it, I placed an ad for $25 in the

paper, made 3 signs and hung them nearby, and had a garage sale from

8am - 11am. I made $518 after expenses. 7 hours of my time for

$518 to MAGIC. This money I donated to the RSS scholarship fund, so

maybe one of you will be able to go to the convention! Yahoo!!!

But it is that easy! But we can't just raise money for the

scholarships, we have to raise money for MAGIC. They run the

leanest ship around, but it still requires funding.

I know it is very easy to hit delete on my email, but please take

some time and think about what the information you have received

about RSS has been worth to you. The vast majority of information

you have received started with a tiny group of parents who founded

the RSS division at MAGIC. Jodi Zwain, Cathy Walbridge,

Bauer, Friend and others. Katy and I came in way later.

Kearns and Callahan have started a new wave of

fundraisers -- big ones. But you don't have to start that big.

Just signing up for an annual membership is a start. Stepping

forward and saying " I recognize that the only way positive change

will happen for our children is to band together, to form an

official group and work for the rights of our children together! "

This is what the RSS/SGA division at MAGIC is about. Our children --

all of our children.

There are some members on this listserve who really don't need to be

on it anymore -- they may have older children and don't have major

issues that come up. But they stay on to try and give advice to

families with younger children -- it is this giving we have to

nurture and appreciate. We may not always agree with what everyone

says, and that is what is so great -- we don't have to agree with

each other -- but we do have to appreciate each other.

So thank you from me to those who stay on and try to give help when

you really don't need to spend the extra time reading all the

posts. I want to thank the " lurkers " as well -- I get little notes

from some of you at times. You may not feel comfortable posting,

but I like the little private notes you send me. Lurkers are great!

OK. I have done my monthly " stand-on-a-box-and-shout " thing.

I will keep you posted as to the status of an official emergency

treatment document. If anyone knows anyone with an extra $5,000

that they want to donate to change the entire webbase of how MAGIC

does business -- let me know!!! Imagine -- clicking on a button and

downloading medical journal articles, new members could click on a

button and immediately be connected via email to another parent to

network with, click on photos and personal stories of other RSS and

SGA children, on-line surveys with results posted, and the list goes

on.... seeking one large $5,000 donor!!! HA!

February 16, 2004

,

Did you say it would be tax deductible? And is $5,000 a good estimate? I

have a friend who owns his own business so I could always ask if he's

looking for a good place to make a donation. All he can say is no.

Regards,

Comrie