- donations, website

[Guest guest]

Any and all donations to MAGIC are tax deductible (based on whatever

IRS guidelines apply for your family). And yes, we were told last

summer that $5,000 is a good estimate. You are right, all someone

can say is NO -- and think of the advertising with their name/ad on

the website itself!

> ,

>

> 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

>

> ER letter & others

>

> 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!

>

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