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“Enjoy life!
Yesterday has been,
tomorrow is yet to come, but today
I am living my dream”

“Het leven is een feest, gister is geweest, morgen moet nog komen maar vandaag leef ik mijn dromen”
- Fiona Waddell

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The CDG Family Network
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           to Exchange Information, RaiseAwareness, Encourage Research, Advocacy
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Do you have a CDG story to share?
We invite you to share your stories of Strength, Hope and Love.  E-mail your story to  Webmaster.

Remember the saying, April showers bring May flowers? Well, South Dakota is growing more than flowers! Scientists and Physicians from across the country are merging on Sioux Falls to begin working to bring a world-class research facility to the Midwest.

The much needed facility will focus on a group of disorders affecting children like ours. We of course are talking about an area of science many doctors across the country and around the world are not familiar with. Sanford will be the voice to help us change that, creating awareness and opportunity.

I remember when Clara was little, the physicians would say, 'Well we don't know how long she'll live.' So as a parent obviously you keep waiting, waiting, waiting. thru all the illness episodes ...And at some point you have to shift gears and realize you must begin to plan for the future. Clara will be 21 this year.

We know for a child with CDG, the common cold, could mean time spent in the hospital sometimes critical time sometimes sadly we loose them all to soon to something that can seem so simple. But now with Sanford doing research and a dedicated research facility, Clara and so many others are even more hopeful for a long full-filling life. The knowledge we can collect and use will help create a better future for our kids.

Dr. Eugene Hoyme with Sanford Children's says, “What Sioux Falls will serve as is a place where there can be a central site where families can get information about the condition. Perhaps there can be a place where we can collect data.”

This can be the bridge that gets everybody the services they need and that's absolutely a phenomenal start.

Cindy Wren Gray President

Glycosylation is a process by which all human cells build long sugar chains that are attached to proteins. Together the proteins and their attached sugars are called glycoproteins.  Glycoproteins, have many very important functions in the human body and are required for the normal growth & function of all tissues and organs.read more
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Protein Glycosylation Animation
Glycosylation Pathway
Slide Show
The Sugar   Train 
CDG-I Defects
CDG-II Defects

Thank you for your support of
The CDG Family Network.
 We exchange information with families  and physicians, locate new families and  raise awareness among the medical  community. You can assist in these  important efforts. Donate up to 25% of  every purchase to CDGFN thru iGive.
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Disclaimer: This is a forum for the free expression of ideas created by, and for, parents of children diagnosed with Congenital Disorder of Glycosylation.  The information provided on this web site should NOT be used as a substitute for seeking professional medical diagnosis, treatment and care. You should not rely on any information in these pages to replace consultations with qualified health professionals.
The CDG Family Network,  Attn: Cynthia Wren-Gray,  P.O. Box 860847,  Plano,  Texas, 75074   Phone: 800-250-5273