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Reply | Forward Message #1211 of 1249 |

Welcome Members,

My name is David and I am the Founder of the our yahoo support group and the TransGlobal Health Community Center (TGHCC). This group is one of more than 600 others that make up the TGHCC. The TGHCC helps promote our groups on the web.

It have been amazed at how much this group has grown over the years. I also hope that each of you have been blessed by this group and have made many new friends.

Like many of you, I am a proud parent. I'm a single parent (father) of three wonderful kids. My oldest daughter is 18 and I have two boys, ages 13 & 11, affected by an extremely rare genetic disorder called X-Linked Alpha Thalassemia Mental Retardation Syndrome (ATR-X). Both my sons are severely mentally and physically challenged. Both are non verbal and life long dependant upon care.

Back in 1999 when their mother and I learned of their diagnosis, we needed the information and support from other parents with boys like ours. We learned that there were less than a hundred known affected boys in the world. Our families were spread out all over the world and communicating with them was not easy. It was then that I started looking for a way for us to communicate using the internet. It was then that I discovered a service called eGroups and started a support group for ATR-X. Today, we have 146 members.

In my search for a way to better communicate with others, I tryed to find a website dedicated to providing support groups for various diseases and disorders but only found sites for specific to one disorder. During this period of time, I became involved with NORD - National Organization for Rare Disorders and learned that there were over 6000 rare diseases. Since I could not find a website dedicated to providing support groups, I decided to build one myself. This was the beginning of the TGHCC. Today, the TGHCC offers over 600 support groups and serves 50,000+ members.

Over the years, we have been blessed with a little publicity from various sources. The Dallas Morning News did a complete 3 page story on the boys and our family. Later, the New York Times did an article on the Transglobal Health Community Center and our outreach mission. The articles were picked up by various other publication and published.

I am always looking for ways to help promote and support others affected by these rare "orphan" diseases and disorders. I am also committed to helping support medical research for rare "orphan" diseases and disorders. Each month, 60% of the profit from sale of items in the TransGlobal Health Community store goes to medical research. I have designated two diseases/disorders each month to receive this funding.

Professionally, I work for Travelers Insurance as an Underwriting Account Manager. Prior to joining Travelers, I was a 15 year veteran Police Officer with the Baylor Health Care System.

I hope this helps give you an idea of who I am. Providing support for others has become my passion. Helping others has also helped me cope with the daily challenges.

My prayers are always with you and your families. God knows we all need the help.

David

Website: http://transglobalhealth.com

Phone: 214-440-1072

Fax: 1-800-397-0065

Yahoo Messenger: transglobalhealth@...

eMail: dhhughes@...



Wed Feb 28, 2007 2:31 am

rarediseases
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Message #1211 of 1249 |
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Welcome Members, My name is David and I am the Founder of the our yahoo support group and the TransGlobal Health Community Center (TGHCC) ...
David Hughes
rarediseases
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Feb 28, 2007
2:39 am

Thankyou David for setting up this group, which to many of us has been a real blessing, if it wasn't for this group in the beginning i would of felt truly...
michaela_rees
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Mar 1, 2007
6:18 pm
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