We are currently revising the Guidebook to include up-to-date information; at this time, we have run out of inventory of the printed paperback Guidebooks before the new edition is ready. For the interim, we will send new members an electronic secure pdf of the current Guidebook.
This Guidebook is recognized throughout the world as THE reference guide for RSS/SGA children.
It is a one-of-a-kind guidebook for anyone associated with raising or caring for an RSS/SGA child. The 330-pages are filled with 15 separate chapters, each focusing on topics such as: “Physical Characteristics”, “Improving Your Child’s Weight” and “Moving into Adulthood.”
Each chapter summarizes and cites published medical research on that topic.
Additionally, you may find yourself laughing or crying but always learning from the many personal stories and photos of RSS/SGA children throughout the Guidebook.
This Guidebook is ONLY available through membership to The MAGIC Foundation. Since 2009, we have distributed 2,500 copies to families and medical professionals.
Parents
This book is a FREE gift to RSS and SGA families who join The MAGIC Foundation. Only one book per membership is allocated. To purchase multiple copies you must contact MAGIC by calling (630) 836-8200. If you have a RSS or SGA child and would like to receive this book, you can join MAGIC online or call. When filling out your membership, make sure to categorize your child's condition as RSS or SGA to automatically receive your copy of this publication.
For families in the US - guidebook and shipping is FREE
For families outside of the US - the guidebook is free, but unfortunately due to the high cost of postage you must pay the shipping cost. After your membership is processed you will receive an email from Pam with the exact cost of postage and information on how you can pay the shipping.
Medical Professionals
A free copy of this guidebook is available on CD (one per practice). If you are a medical professional and wish to receive a free CD with a pdf file of the 330-page guidebook, email Pam at pam@magicfoundation.org with your complete name and address of where the CD should be shipped. Also please include your phone number.
TITLE: RSS/SGA – A Comprehensive Guide: Understanding aspects of children diagnosed as having Russell-Silver Syndrome or born Small-for-Gestational-Age
AUTHORS:
Salem J,
Harbison, M.
Netchine, I.
Stanhope, R.
Baranoski, C.
Czernichow, P.
Dumont, C.
Fitzgerald, J.
Gardner, J.
Geffner, M.
Getch, Y.
Toumba, M.
PUBLICATION INFO: Chico, CA: Quadco Printing Inc.;2009.
ISBN Number: 978-615-23362-8
LIBRARY OF CONGRESS CONTROL NUMBER: 2008940884
BRIEF DESCRIPTION:
This guidebook will educate parents, physicians, educators and others about the myriad of issues that confront and confound the child who has Russell-Silver Syndrome (RSS) or gestational growth restriction (SGA/IUGR). Co-authored by a variety of renowned medical professionals involved in the study of RSS/SGA children, the book is based on more than 300 published sources as well as anecdotal patient information.
Chapter topics range from diagnosis, genetics, physical characteristics, common GI issues, hypoglycemia and ketonemia, typical growth patterns from infancy through adolescence, adulthood issues, improving weight and height, nutrition, overcoming oral intake challenges, school accommodations and legislation, and social and emotional growth. This 340-page book represents the first single comprehensive source that will serve parents and physicians alike.
How this One of a Kind Guidebook Became a Reality
Dayna Carney is the RSS Division Consultant for the MAGIC Foundation:
My seven year old daughter Alyssa has RSS. When Alyssa was diagnosed nearly 6 years ago, we were so hungry for information on our daughter’s condition and what our future held. We searched relentlessly and were so lucky to find MAGIC. It was wonderful to speak with other families in a similar situation. We read every medical article we could get our hands on and tried to make sense of the medical lingo.
Jennifer Salem was the driving force behind the development of the Guidebook. She was the Division Consultant for the RSS Division of MAGIC for many years prior to me. She had a vision to create a document that combined all of the known medical information in one short manual or “guidebook” so to speak to help new families tackle the maze that is RSS.
Now, the “guidebook” is here! It however, is not just a "guidebook" but rather a one of a kind resource with hundreds of pages of information, numerous doctors represented with published medical articles and is thorough in more ways than one!
Thanks to the generous donations of countless MAGIC families and the years of dedicated work by Jennifer and many of the top researchers in the RSS field, this guidebook is amazing. Chapter topics range from diagnosis, genetics, physical characteristics, common GI issues, hypoglycemia and ketonemia, typical growth patterns from infancy through adolescence, adulthood issues, improving weight and height, nutrition, overcoming oral intake challenges, school accommodations and legislation, and social and emotional growth.
I look back on those early years and can admit they were difficult. They have gotten easier as time has passed. They would have been much easier if we had been able to have this book back then, and will be easier in the future because of it!
TO JOIN THE MAGIC FOUNDATION AND RECEIVE YOUR FREE COPY OF THE RSS/SGA GUIDEBOOK, CLICK HERE
or
If you need help or just want to talk, please don’t hesitate to contact us!
Dayna Carney Russell-Silver Syndrome Division Consultant
Megan Donnell Small-for-Gestational Age Division Consultant