Upcoming Guidebook, & name change

[Guest guest]

Yes, I am finally back to " Salem " -- which for those of you

who are new, is my real name. I had joined some pediatric

psychological websites about 6 months ago, and didn't want to use my

real name..... then couldn't figure out how to change back until

today, when Ken showed me!

For those of you who are new, I have been asked to explain what the

Guidebook is, and give an update. The parents of the RSS/SGA

division of the MAGIC Foundation have been fundraising and making

donations for 2 years now, to raise enough money so that I could

write and publish the first ever " guidebook " on everything you want

to know about raising an RSS/SGA child.

Dr. Harbison and Dr. Stanhope are the managing editors. Several

prominent physicians have written chapters, including Dr. Geffner

(LA), Dr. Czernichow (Paris), Dr. Toumba (Cyprus) and Dr. Dumont

(Chicago).

The Guidebook begins with a Welcome/Intro, then goes through

Diagnosis, then Genetics, then Features & Functional Abnormalities.

For example, every feature is described, and in some cases, photos

included. A full discussion of GI Complications is discussed. Then

a chapter on the common growth patterns in a child's life; then How

to Improve Weight, then How to Improve Height. There will be a

chapter on Nutrition, and one on School Issues. There is also a

chapter on the long-term health consequences of being born SGA. We

have a comprehensive " Parent to Parent " question and answer session

at the back. Throughout the book, we have scattered personal

stories and photos.

The entire book is written so that a physician would want to read it

as well, and as such, every 2 pages or so, there will be " summary "

boxes which highlight in layman language the most important findings

on those pages (for parents).

The inside front and back covers will have tons of photos of RSS/SGA

children. And most importantly, the ENTIRE document cites every

possible published research (I spent 2 years doing this, and there

are more than 160 current cited research documents). This way, when

you say to your doctor " I would like to talk about the possibility

of delayed gastric emptying in my RSS child " and the doctor

says " huh " you can give him this Guidebook.

The Guidebook will probably be 120+ pages, four color. The graphics

designer is working on it now (an RSS parent), and we hope to at

least have dummy copies at the convention, if not the actual thing.

We have raised about $20,000 so far, which will cover the printing

and production costs (my work was donated, I am " free " ). However,

we would ideally like to print enough copies so that we could do a

physician mailing in the future. We will need to raise another

$7,000+ to pay for mailing costs if we want to do that. We may go

ahead and print the extra copies just hoping that we raise the money

later.....

If you have any questions whatsoever, please let me know. We will

keep you posted as to the status of the Guidebook.

Salem