Upcoming Guidebook & HELP FOR WALKATHON

[Guest guest]

Hello everyone -

Several people have written me lately asking me what the upcoming

RSS/SGA Guidebook will be about. So I figured I would post an email

here and tell you just what will be included in this fabulous book.

At the bottom of this email is a summary from an email I sent someone.

We have raised enough money to be able to produce and print this 70+

page book. But we need to raise another $10,000 or so to be able to

print 3,000 - 5,000 copies -- enough to provide free copies for

members of MAGIC, reduced fee copies for non-members, and the big

thing -- a direct mail piece to all pediatric endocrinologists!!!!

The easiest way to raise this money is through our 2nd Annual

Walkathon. Call MAGIC tollfree 1-800-3MAGIC3 for your free

participation kit NOW. The kit includes everything you need for a

walker -- walker's bib, step-by-step instructions, pledge sheet, even

sample " donation plea " letters and " thank you " letters!!!! You pick

whatever day you want to walk in Sept or Oct; you pick the TIME; you

pick the PLACE!!!! You choose everything!!!

We raised $50,000 ($25,000 for convention costs and $25,000 for Educ &

Research) last year with just 33 families participating. Come on,

guys!!!! Let's get 75 families to raise $75,000!!!! It is the

easiest thing in the world to do, and then you never have to feel

pressured to make a donation to MAGIC for the rest of the year!!!

Call 1-800-3MAGIC3.

Here is the information about the Guidebook.

***********

The Guidebook is a collaboration from several different contributing

authors (renowned physicians like Harbison, Stanhope, Cznerichow and

Geffner) and myself as the lead author.

It begins with the beginning -- basically the sections as outlined go

as follows:

Welcome

Introduction

What Causes RSS and SGA?

Diagnosis

Physical Features and Functional Abnormalities (which will include

full descriptions and photos of most) -- this section alone is the

greatest in length

Growth Stages (intrauterine, infancy, childhood & adolescent)

(includes full discussion of average puberty for RSS/SGA kids)

Growth in Weight (discussion of feeding problems, appetite & GI Issues)

Growth in Height

Cognitive/Intellectual

Treatment for Maximizing Height (comprehensive discussion on GH, as

well as delaying of puberty)

Consequences into Adulthood: Being Born SGA

Life as a Short-Statured Adult (more practical issues)

Specialized Sections:

Nutrition and Feeding Therapy

Anesthetic Management

Managing Illness/Emergency Treatment for the RSS/SGA Child

School Accomodations (IEP vs 504, etc)

Helpful Hints from Parent to Parent (a very lengthy section of

questions and answers from other parents to parents)

I began with about 4 months of obtaining and reading and recording

data from 140 different medical journal articles on topics related

directly to RSS and SGA children. I created a database log from this

research. After mapping out the outline, I then realized which

sections would be too difficult to write, and approached the

contributing authors for those sections. (For example, an experienced

RSS nutritionist is writing the Nutrition as another is doing Speech

Therapy).

The Guidebook is written at a college-level, with endnote references

throughout the body of the text to all cited medical journals. In

bold and colorful boxes on each page we will " summarize " key points in

simpler language.

Throughout the Guidebook will be personal stories and photos of

children. In addition, we also have photos throughout the Features

part of the various characteristics we are discussing. The inside

front and back covers will display miscellaneous photos taken by Joe

Jovanovich of children from Conv 2004 and Conv 2005.

The Guidebook is being written for both parents and physicians. We

have raised the $10,000 it will cost to produce and print 3,000 or

more copies of this Guidebook. We hope to raise another $10,000

through the Walkathon in order to distribute it to all pediatric

endocrinologists.

The involved physicians truly feel that this will be a groundbreaking

document for parents, and physicians. Hence, why they are involved in

it.

Can you help us by joining and walking for MAGIC this September or

October???