RE: Question needing feedback from all

[Guest guest]

Jenn,

I am a member of magic and my personal opinion may be different from

others however I feel that anyone who wants a copy should have to pay for it.

The price is completly your decision. It's cost you time and money to put this

together therfore it shouldn't be free. I'm a mother of 4 and only 25 years

old so yes i do live pay check to pay check with little to spare but that

doesn't change my opinion. If i were you I really wouldn't stress myself out

over

this just think of everything you have put into this project and realize

that your hard work deserves something in return.

Hope this helps,

Chriisy mom to madison 3 1/2 yrs. and finally 20lbs

[Guest guest]

I think there should be a charge for non-members,and also members should pay for

shipping. The $30.00 a year is just not for information on RSS but also to help

other families get the care and support they need. And if you think about it,

it's not even .10 cents a day. I think the listserve is great but everyone needs

the Magic Foundation.

Question needing feedback from all

I am posting this here because many of you are not members of MAGIC

and many of you are, and I would like honest feedback. Please email

me PRIVATELY; I don't want to take up space on the listserve with

answers.

OK. Most of you know that I am writing a book on RSS/SGA --

basically it is an " everything you need to know from A-to-Z about

RSS/SGA " book for parents and physicians. It will have photos,

etc. It will be approximately 75 or more pages. It cites all

published medical studies that support all info in the guidebook.

It's big. And it will be expensive to both print it and mail it.

I have grant monies from several families that should cover the

printing costs. Now the question has to do with distribution. I

would like to save the balance of the grant money to pay for free

copies for physicians.

Several doctors who are involved in helping create this book have

said that MAGIC should charge ANYONE for a copy, even if it is $5,

to cover postage, etc. Their thought is that when someone pays for

something, they are more likely to take it seriously.

What we don't want is people just asking for copies and not really

using them, etc.

However, on the other hand, should information as vital as this

Guidebook cost money?

Now, playing devil's advocate. This guidebook is a direct result of

families being members in MAGIC's RSS/SGA division. We can't do the

research and create the information without families joining MAGIC.

And as many of you can attest, mote than 200 of you are NOT members

of MAGIC. So... do we give you the books for free?

If we give the books for free, than what persuades a family to

become a member of MAGIC? How does our division continue to apply

for grants, persuade doctors to listen to us, etc.?

HELP!! You can see the quandary I am in. I have always believed

that children's access to the best medical info should not be based

on their parents' wallet. However, we can't continue to fight for

our RSS/SGA children without people joining MAGIC. And so many of

you have said that the reason you don't join MAGIC for the $30 a

year is that you can get the same info here free on the listserve.

So. What should our RSS/SGA division do?

Do we ask the same families as always to go and do more fundraising,

raise enough funds to be able to provide free copies of the book to

anyone who asks?

Do we charge a nominal fee for shipping for NON-members only and

give it free to members?

Charge shipping to members, but charge MORE for non-members?

I am hearing that shipping could be $2-3 per book per book.... It

adds up quickly with limited budgets.

Anyone who has the patience to still be reading my email, I would

love ANY feedback whatsoever!!!

Jenn

[Guest guest]

Here are my thoughts. You charge a fee for EVERYONE. This way the

non-members are contributing something and the members already

understand the significance of our donations. There is no reason to

waste grant money on the shipping when we WANT the books and can

afford a few dollars to have it sent to us.

As for the physicians, I'm not really sure. I know that I sent the

videos to 3 of my doctors and they were very excited to receive

them. It was nice to be able to say that MAGIC `gave' them the

videos. However, I only sent the videos to the docs that I knew

would be willing to watch and learn. With that in mind I have no

doubt that all 3 of those docs would have paid to receive them as

well. After all they have more money then most of us...Hehehe

And my final thought is this. If you charge shipping plus an extra

$2.00, which is still a great bargain for a book of this magnitude,

then it would also act as a fundraiser to raise more money for

future projects.

Anything you decide Jenn we will support. You are the one that has

invested the time and effort. We know that you always have our

kids' best interests in mind. We trust you! And you'll never make

everyone happy!!!!

le