Question needing feedback from all

[Guest guest]

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