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Hi! My name is Dayna Carney and I am 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, the Division Consultant for many years with MAGIC 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, more than 5 years later, this “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!
If you need help or just want to talk, please don’t hesitate to contact us!
Dayna Carney RSS Division Consultant
Shannon Barrett SGA Division Consultant
Email us: ContactUs@magicfoundation.org
Subject: RSS-SGA |
PRODUCT: RSS/SGA Guidebook
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.
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PARENTS
This book is a FREE gift to RSS and SGA families who join The MAGIC Foundation or those who are current members of MAGIC.
One book per membership is allocated.
To receive multiple copies you must contact MAGIC by calling (708) 383-0808.
If you have a RSS or SGA child and would like to receive this book, you can join MAGIC online here: /www/docs/941
make sure to categorize your child's condition as RSS or SGA to automatically receive your copy of this publication.
MEDICAL PROFESSIONALS
A free copy of this book is available (one per practice). However, the criteria for receiving your free book is; you or a member of your staff must call the Foundation personally to ensure correct shipping etc. information is obtained. The number is (708) 383-0808.
Testimonials from families:
"I can't express my gratitude adequately for this incredible gift of information which is the best tool we have as parents. A couple of years ago I posted a blurb talking about how hard it is to get doctors to understand RSS because even the medical sites where few and far between. I looked up RSS in the Encyclopedia of Pediatric Endocrinology and it was mentioned only 5 times and in the context of Idiopathic Short Stature!!!! Now we have the answers, the protocols and the published data which is essential for the care of our kids."
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Jennifer Salem, you rock. I love you and your family so much. I love MAGIC and its dedication to us all. Because of this, I will be telling everyone, BUY THE BOOK! I know what will be included in the Christmas basket this year. I know what I can take to our new
G.I. Dr. I know that no matter where the Lord sends us (we are both ministers and get moved around), I now have a tool to ease the way into excellent medical care for my son.
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"I just wanted to tell everyone at the MAGIC foundation how grateful I am to have this book. I spent 3 hours last night reading it and could not put it down. I picked up about a dozen tips/things that directly apply to our situation with our son, Jarod. This is not only amazing for us as parents, but we can FINALLY articulate information to FAMILY through this book. This is such a huge step forward for us as RSS/SGA parents. I know tons of hard work went into this. Please know that you have already impacted lives in just a few days of releasing this! Can you imagine the impact over a longer period of time?? Thank you is just not enough. I am SO grateful. You are all a blessing to us." |
