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The CDG Family Network
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Welcome to Our Website

Founded in 1996, The CDG Family Network is a non-profit 501 (c)(3) organization founded by parents seeking information and support for a group of disorders known as Congenital Disorders of Glycosylation.   We exchange information with families and physicians, locate new families and raise awareness among the medical community.  Our organization fosters communication among families. We accomplish this task through a variety of ways that include our newsletter, internet page, family conferences, parent contact list, and e-mail listserv.

The CDG disorders are a group of newly discovered metabolic diseases called "Congenital Disorders of Glycosylation".   CDG disorders cause abnormal tissue and organ development affecting the entire body, especially the function of the central and peripheral nervous system.  Through awareness doctors around the world have begun to recognize symptoms of the different types of CDG.  Diagnosis can be difficult. Doctors should consider CDG if a child presents with any unexplained delayed development, seizures, strokelike episodes, or has cerebellar hypoplasia.   Sometimes there is multi-system involvement, such as; percardial effusions and liver disease.  Type Ib presents with a whole different picture, these children have problems with their gastrointestinal tract but are neurologically and intellectually normal.  It is our belief many children and adults are not diagnosed and the true number of cases are unknown.

We hope you find this website helpful. Please feel free to contact our organization if you have question's about the content of our website or if you would like further information.


Contact Information


Mailing Address:

The CDG Family Network
Attn: Cynthia Wren-Gray, President
P.O. Box 860847
Plano,  Texas, 75074

Phone: 800-250-5273

Email: .  
Where to find help and information.    E-mail: cdgaware@aol.com


Discovery

This is an excerpt from a presentation given by Cynthia Wren-Gray, President, CDG-Family Network at the 2003 Annual Society of Glycobiology Symposium.  

"This is my favorite quote, Albert Szent-Gyorgi says;    "Discovery is seeing what everybody else has seen, and thinking what nobody has thought."  I couldn't pick a better quote via the Hungarian scientist for CDG because people see CDG children, I'm sure of it, in hospital environments, in medical clinics, and they never think about CDG.  And that is really the focus that as an organization we are focused on being able to change people's mindsets.  Failure to thrive can be many things but one of those things can be CDG."

"We want to partner with the scientific and medical community.  As parents we have very valuable information.   If we can pool our resources together what discovery can we find?  There is a gap that exists between the science community, the medical community and the parental community.  And I believe in that void, in that gap, is where we can find discoveries, we can find new methods, new treatments, new options to discover CDG and make more people aware of CDG and treatments options and hopefully a cure one day for CDG."

The entire presentation may be viewed via this link  Discovery.    Download Quicktime to view the presentation if needed. Quicktime.


Our Mission

  • to exchange information about CDG with families and physicians
  • to locate new families
  • to raise awareness among the medical community and general public and to encourage medical research


2010 Board of Directors

  • President:
    Cynthia Wren-Gray - South Dakota
    Phone: 800-250-5273
    Email: cdgaware@aol.com
  • Secretary:
    Deborah Northcott - Texas

  • Treasurer:
    Beverly Birdwell - Florida
    Email: cdgtreas@hotmail.com
  • Director:
    Bradley Gray - South Dakota

Committee Members

Informational Committee:
We are continually looking for additional individuals willing to serve on our Informational Committee.  If you are interested in serving as an Informational Committee member email us: cdgaware@aol.com


2010 Medical Advisory Group

The CDG Family Network is proud to have the some of the best CDG experts in the world available to us as our Medical Advisory Group. We have been incredibly blessed with a wonderful group of physicians, researchers, and educators to help make information available to families and local physicians. They contribute to the newsletter, provide information and graphics for our webpage. Their participation in our family conferences allows The CDG Family Network to bring up-to-date research information directly to parents. They are intensively involved in disseminating information and educating about CDG.

Dr. Donna Krasnewich Donna Krasnewich, MD, Ph.D.   Dr. Krasnewich is a board certified Clinical Biochemical Geneticist and Pediatrician. She trained at Wayne State University School of Medicine in Detroit, Michigan and received her M.D. and Ph.D. in Pharmacology in 1986. After completing her Fellowship in Genetics at the National Institutes of Health (NIH) she joined the faculty of the National Human Genome Research Institutes (NHGRI) at NIH and is currently the Deputy Clinical Director of NHGRI where she sees children with developmental delay and continues her research on Congenital Disorders of Glycosylation.
Phone: 301-402-8255  Email:  dkras@mail.nih.gov

Dr. Hudson Freeze
Hudson Freeze, Ph.D.
  Dr. Freeze is Professor of Glycobiology, and Director of Glycobiology and Carbohydrate Chemistry Program at the Burnham Institute. He earned his Ph.D. from the University of California at San Diego in 1976. Subsequently he held fellowships in Biology, Medicine and Neurosciences at the same institution. In 1988 Dr. Freeze was recruited to The Burnham Institute. Dr. Freeze’s lab works on inherited diseases called Congenital Disorders of Glycosylation (CDG). The other major focus in Dr. Freeze’s lab is a new facet of how an unusual sugar chain modification is involved in “inflammation” including Crohn’s disease, ulcerative colitis, cancer, and arthritis.  Phone: 858-646-3142  Email: hudson@burnham.org

Dr. Bradley Miller
Bradley Miller, M.D., PhD.
   Dr. Miller is an Assistant Professor at the University of Minnesota with an interest in the insulin-like growth factor (IGF) system. He is also interested in the endocrine aspects of abnormal glycosylation in children with CDG. Dr. Miller grew up in Illinois and the Upper Peninsula of Michigan. He attended Nothern Michigan University where he received a Bachelor of Science in Biochemistry. While at NMU, he became interested in basic science research. He pursued a combined MD/PhD as part of the Medical Scientist Training Program at the Medical University of South Carolina in Charleston, South Carolina. His research at MUSC involved the cellular signaling of the insulin and IGF-1 receptors. He returned to the Midwest for training in Pediatrics and Pediatric Endocrinology at the Mayo Clinic in Rochester, MN. While at the Mayo Clinic, he first became involved in caring for children with CDG. Dr. Miller was involved in studies at Mayo Clinic to help understand how protein glycosylation impacts the growth cascade.   Email: mille685@umn.edu

Dr. Fernando Scaglia
Fernando Scaglia, M.D.
  Dr Scaglia is a clinical and biochemical geneticist who currently is an Assistant Professor of Genetics at the Dept. of Molecular and Human Genetics. He received his M.D. at University of La Plata, Buenos Aires, Argentina and completed his pediatric residency and fellowship training in Medical Genetics at Emory University School of Medicine. He currently works and conducts research in the area of biochemical genetics, with an emphasis on clinical reseach involving the study of the natural history and potential treatment of mitochondrial encephalomyopathies, the use of stable isotope studies for characterization of urea cycle disorders, and the clinical and molecular characterization of cerebral folate deficiency. He is also interested in the vlinical characterization of CDG, a group of disorders whose presentation, with multiorgan involvement, could sometimes mimic mitochondrial encephalomyopathies. Phone: 832-822-4292  Email: fscaglia@bcm.tmc.edu

Dr. Jaak Jaeken
Jaak Jaeken, MD, Ph.D
  Dr. Jaak Jaeken is a full Professor at the Faculty of Medicine at the University of Leuven, Belgium. He studied Pediatric Medicine at the University of Leuven (Katholieke Universiteit Leuven) where he received his MD and PhD. After completing his Fellowship at the University of Zurich he became Director of the Center for Metabolic Diseases at the University of Leuven. In 1980 Dr. Jaeken was the very first doctor to publish his description of CDG. Today Dr. Jaeken continues to collect and examine new cases of this rapidly expanding group of genetic diseases and test new methods of diagnosis and therapy on patients when they are available.  Email:  jaak.jaeken@uz.kuleuven.ac.be

Dr. Thierry Hennet
Thierry Hennet, PhD
  Dr. Hennet is Assistant Professor at the Faculty of Medicine at the University of Zurich. He studied Biology at the University of Bern and received his PhD in biology in 1992. His Post Doc work was at the Biomedical Research Center at the University of British Columbia in Vancouver, followed by the Howard Hughes Medical Institute at the University of California in San Diego. In 1996 he joined the Physiological Institute at the University of Zurich as a research assistant. Dr Hennet's research group is searching for new forms of CDG, especially for glycosylation disorders that are related to dysfunctions of specific organs and tissues. In addition,they are trying to develop a therapy for CDG-I based on a pharmacological upregulation of N-glycosylation.  Email: thennet@access.unizh.ch

Dr. Gert Matthijs
Gert Matthijs, PhD
  Dr. Matthijs has a PhD in pharmaceutical sciences and is a certified specialist in clinical molecular genetics. He is the head of the Laboratory for Molecular Diagnostics at the Center for Human Genetics in Leuven, Belgium, and a professor at the University of Leuven. His research interest is in CDG. The gene for CDG-Ia was first cloned in his laboratory, back in 1996, and his group has been involved in the elucidation of different other types of CDG. He is also the Coordinator of EUROGLYCANET, a European Network for the systematic study of CDG and related diseases (www.euroglycanet.org). The network offers expert testing for CDG, and is of course also interested in novel types of the disease. Leuven acts as a reference centre in the context of the network. The Laboratory for Molecular Diagnostics is offering genetic testing for the different types of CDG, including prenatal diagnosis.


Raising Awareness

The CDG Family Network realizes there is a great need to raise awareness of CDG to insure children are diagnosed and to insure we encourage medical research.  We accomplish this by sharing information with the distribution of our newsletter, brochures and webpage. 

Brochures:
The CDG Family Network developed our first informational brochure in 1997 with the intention of raising awareness of CDG.  Design, printing and initial distributions of new parent and professional brochures has been completed.  Brochures are available in both English and Spanish.  

Clinical Profile
The finalization and initial distribution of a Clinical Profile Questionnaire that will aid in the data collection for medical research and potential diagnosis.  A special thank you to Dr. Erik Eklund, post doctoral fellow at The Burnham Institute, for his input and design work. The questionnaire can be downloaded from the Download CDG Publications and Newsletter section of this page.

Newsletter Distribution:
 Mailing of over 1000 newsletters to families and professionals during 2004. The CDG Newsletter is published twice a year: Spring/Summer and Fall/Winter.  It features stories about our children along with pictures, organizational news, research news, medical resources and other helpful information.

2003 Annual Child Neurology Society Meeting
Board member, Tomas Cubillo spoke on behalf of the CDG Family Network to a large audience of clinicians and other medical professionals at the 2003 Annual Child Neurology Society Meeting in Miami, Florida.  Distribution of the new Clinical Profile Questionnaire at this gathering is creating more awareness about CDG and asking the group to assist in the increasingly earlier diagnosis of CDG.

2003 Annual Society of Glycobiology Satellite Symposium
CDG Family Network President Cynthia Wren-Gray, spoke on behalf of The CDG Family Network to an international group of researchers and clinicians at the 2003 Annual Society of Glycobiology Satellite Symposium in San Diego, California.  Cynthia thanked the participants for their interest and continued efforts in the area of CDG research and noted that many children with CDG remain undiagnosed for quite a long time and the research they conduct is helping to move toward much earlier diagnosis.  She also expressed how fortunate we feel, as a group, to have such a group who has chosen to concentrate their study and research in the CDG area.

CDG Poster at the 1999 Annual Meeting of The Society of Glycobiology
The Society of Glycobiology is a non-profit organization promoting the science of glycobiology.  This year the 27th Annual Conference was held in San Fransicso, California.  The CDG Family Network provided a poster displaying pictures of seven beautiful children under the heading; "What Do These Children Have In Common?  A Defect in Glycosylation Resulting in a CDG."  Along with the poster we provided newsletters and brochures for distribution.

Presentation at the 1998 Annual Meeting of The Society of Glycobiology
In November of 1998, Donna Yunes, past president of The CDG Family Network had the pleasure of presenting information and a new video about CDG called "CDG: The Long Road To Diagnosis" at the Society of Glycobiology in Baltimore, Maryland.  The Society has about 400 members world-wide; approximately 80% are scientists who work in laboratories in the U.S. Universities or medical schools.  It was a wonderful opportunity to bring first hand information about our children to the scientists in the field of glycobiology.  The response from the audience was very warm and overwhelming.  Our grassroots efforts again are paying off to bring about awareness of this group of disorders.

"CDG: The Long Road To Diagnosis"
In 1998 The CDG Family Network produced an 18 minute video for the purpose of raising awareness of this group of diseases.  Six families were featured presenting the different types of CDG. They told their story and of the difficulties in reaching a diagnosis.


Parent Information:

Parent Information Packages:
We provide our information packages to anyone wishing to learn about CDG.  They contain medical literature, brochure, and recent newsletters.  Contact us today. Email us at: cdgaware@aol.com

Parent Contact List:
Our organization maintains a list of parents wishing to connect with one another.

Email Listserv:
Fostering communication between families is very important. No matter what time of day the CDG Listserv is one way families from all over the world can contact each other, ask questions or simply talk about their children.  This is an open list.  Currently there are approximately 100 subscribers made up of families and physicians and others wishing to learn more about CDG.  To subscribe to the listserv go to the CDG Listserv. Join The CDG Listserv


Download CDG Publications and Materials

This page contains links to download different publications from the CDG Family Network. The files are in an MS Word (.Doc) or a PDF version (requires Adobe Acrobat Reader).  If you don't have Adobe Acrobat Reader, click on icon for a free download.

Click here to download Adobe Acrobat Reader

Forms/Applications/Questionnaires CDG Brochures CDG Newsletter


Family Conference/Meeting Information

For the past several years The CDG Family Network coordinated a conference where families and top CDG researchers came together.  Doctors present information on advances in CDG research and it give families the opportunity to ask questions.  Families have time to meet one another and talk about important health and behavioral issues.  For some it is the first time they've ever met another child diagnosed with CDG.  It is also true for some researchers, very often it's the first time they've met a child diagnosed with the disease.  Not only are these conferences heartwarming but a fantastic way to enrich all or our lives.


Fundraising

The CDG Family Network is a volunteer organization, contributions are accepted to defray overhead costs, mailing materials and publication of our newsletter and brochure.  All contributions are tax-deductible under Section 501(c)(3) of the Internal Revenue Code.

If you would like to hold a fund raiser in your community, please contact us. We can help with ideas and provide information about our organization for your event.  In the past families have had great success coordinating a dinner dance silent auction, 100 holes of golf for CDG, Thanksgiving turkey bowl, The CDG Family Network Cookbook, marathon runs for CDG, and Roller Skating.


Join the CDG Listserv

This list was started for families and professionals who have children or patients with Congenital Disorder of Glycosylation (CDG).  Anyone affected by CDG or related diseases are invited to share your experiences as well as questions and answers from other families with the same concerns.

You may subscribe and unsubscribe your email address to the cdg listserv via this website
http://www.springmeade.com/mailman/listinfo/cdg


How You Can Help

You can help children diagnosed with this rare genetic disorder by supporting The CDG Family Network, the only organization in the United States dedicated to providing CDG information to families, raising awareness and encouraging medical research.  We do not collect dues.  All contributions are tax-deductible under Section 501(c)(3) of the Internal Revenue Code.

Professional Volunteers:
We need professionals to become involved with our organization, perhaps you have an expertise in finance, fund raising, public relations, or have business experience.  Consider volunteering as a consultant to our Board of Directors.  Please contact us today.

Generate Public Awareness The local media is an ideal source in telling the public about CDG.  Don't be intimidated by approaching the media.  They are always looking for good human-interest stories.  By promoting awareness another child may be diagnosed as a result of your story.  How do you start? Write a letter to the editor of your local newspaper.  If you had a story placed several years ago, contact the media again for an updated story.  If you hold a special event contact your local community calendar.

Contribute Your Story Provide an article for our newsletter column "A Family Perspective" and "Our Stories" on our internet page. Provide pictures and information of any local activities you hold or participate in on behalf of CDG.

Hold a Fund Raising Event Get involved with a special event.  If you would like to hold a fund raiser in your community, please contact us.  We can help with ideas and provide information about our organization for your event.

Make a Financial Donation All financial contributions are gratefully accepted.  Your support means we can continue to provide information to families.  If your donation is to be directed to our Medical Research Fund please include that information along with your donation, otherwise donations are directed to our general fund.  All contributions are tax-deductible under Section 501(c)(3) of the Internal Revenue Code.

Donate Goods or Services We can use services that include: printing, brochure layout and graphic design.  We can use help in finding childcare services at our family conferences.

**Wish List**
Postage Stamps (mail a roll of 100)
Paper (copier, brochure, newsletter)
Envelopes 10x14
Office Supply Gift Cards
AT&T Long Distance cards
Airline Mileage (transferable)

In Kind Contributions Needed
Printing (Brochures, Information Packets etc.)
Video Production
Recording Studio Time/Equipment Use

United Way Did you know donations could be made to The CDG Family Network through your United Way Payroll Deduction Plan at work?  Often relatives, friends, and neighbors ask what they can do to help. Ask them to remember The CDG Family Network when filling out their campaign pledge cards.  Most United Way Agencies allow donors to write in the name of an organization as a designated agency.  Our Federal Tax Identification Number is #02-0491935.

Shop at iGive.com iGive is an online network of shoppers, merchants, and nonprofit organizations dedicated to turning everyday shopping into philanthropy.  Shopping at the iGive Mall earns between 1.5% and 15% for The CDG Family Network depending on your purchase.  It's a great way to help us, be a supporter by shopping online at http://www.iGive.com/CDGS















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