June 2001 Online Newsletter

June 2001 Online Newsletter

Welcome to the June 2001 edition of the Tyler For Life Foundation's online newsletter.

********************************************************************************************************

FEATURED DISORDER OF THE MONTH

Nathan Shockey was born full term and healthy. He became ill shortly after birth and was hospitalized. His condition deteriorated to the extent that he stopped breathing. After being resuscitated he was placed in Intensive Care. Among the many tubes and wires, Nathan lay in a coma, barely hanging on. Nathan's parents watched helplessly as the doctors struggled to determine the cause of his condition-Citrullinemia, the featured disorder for June 2001. Today Nathan is a happy, loving, adorable six-year old, who faces a long list of challenges because of the brain damage sustained while he was in a coma. A simple blood test at birth could have spared Nathan most, if not all, of these effects. In light of this, Nathan's family have become active advocates for comprehensive newborn screening. View full story at http://tylerforlife.com/Featured%20Disorders%20of%20the%20Month/June%202001.htm

********************************************************************************************************

NBS UNITY QUILT

Quilt panels for the first unveiling on the NBS Unity Quilt are due by June 30, 2001. To find out how to participate in the project or to learn more about the project, please contact the project manager at unityquilt@tylerforlife.com and/or visit http://www.tylerforlife.com/NBS%20Unity%20Quilt.htm

********************************************************************************************************

MOTHER'S DAY DRIVE RESULTS

The results of the Mother's Day Fundraiser last month was phenomenal. It exceeded our best expectations. Many thanks to the project chairperson, Wendy Nawn, for all her help in this project. Approximately 74 people and businesses donated for the annual fundraiser raising more than $3,800.00 to help the Tyler For Life Foundation continue to help Saving Babies One Foot At A Time. Many thanks to all who participated in the campaign.

Anyone who would still like to participate in the fundraising drive can make a tax-deductible donation either by Visa or MasterCard by donating now or by snail mail at the address listed below.

********************************************************************************************************

THANKS TO ALL WHO BARED WITH US THROUGH OUR MOVE

The Tyler For Life Foundation moved as scheduled. Many thanks to everyone for bearing with us through the move. It looks like the email and phone is finally working right again.

Please note that anyone who sent an email to tera@tylerforlife.com, marcia@tylerforlife.com, and/or info@tylerforlife.com between May 17 - May 25, we did not receive them. All emails were returned to the sender. The problem was resolved on May 25.

Also, anyone calling the TFL home office, either (770) 947-3638 or (888) 454-3353, between May 17 - June 6 and left a message on the voice mail, we did not get it. The problem with the voice mail and phone lines was finally resolved yesterday, however, we will not be able to retrieve any of the messages left during this period.

If you have not received a response from an email or a message left during this period, please try again. All problems should now be resolved.

Please also update your address books to reflect TFL's new address:

Tyler For Life Foundation
5335 N. Helton Road
Winston, GA 30187

Please update your records with this information. All telephone numbers and email addresses will stay the same.

********************************************************************************************************

NBS EVENTS THIS MONTH

June 8-10
Genetic Alliance Membership Meeting & People's Genome Celebration
mdavidson@geneticalliance.org
vwhittemore@geneticalliance.org
Web: www.geneticalliance.org
Phone: (202) 966-5557|
Washington, DC

June 21
National Urea Cycle Disorder Foundation
2nd Annual X-linked Golf Classic
Contact Person: Kirsta Johnson
Phone: (619) 466-7331
Email: gkmjohnson@home.com
Web: www.nucdf.org
Singing Hills Golf Course San Diego, Ca

June 22 & 23
Parents of Galactosemic Children
National Galactosemia Conference
Email: mesameadow@aol.com
Web: www.galactosemia.org
Atlanta Airport Marriott
Atlanta, GA
Hotel: (404) 766-7900

June 29-July 1
Organic Acidemia Association & National Urea Cycle Disorder Foundation
Joint Metabolic Conference
Phone: (800) 38NUCDF
Web: www.oaanews.org
Marriott - Medical Center
Houston, TX
Hotel: (713) 796-0080

********************************************************************************************************

This is a publication of :

Tyler For Life Foundation, Inc.
5335 N. Helton Road
Winston, GA 30187
Toll Free: (888) 454-3383
Local: (770) 947-3638
Fax: (770) 947-8507
Email: info@tylerforlife.com
http://www.tylerforlife.com

NEWBORN SCREENING: Saving Babies One Foot At A Time

This publication is sponsored by:

BioRad Laboratories
1000 Alfred Nobel Drive
Hercules, CA 94547
Phone: (510) 724-7000
Fax: (510) 741-5817
http://www.bio-rad.com

Donate Now! The Tyler For Life Foundation imagines a day when all babies are comprehensively screened as newborns and are given a chance at life. Your tax-deductible donation of any size helps fund lifesaving, life-altering testing that means hope for the more than 1 in 1,500 babies who are born with a disorder detectable through newborn screening - disorders, when not treated immediately, can lead to serious morbidity, or even mortality. With your help, we can give all babies a chance at life, one foot at a time.

HOME | ABOUT US | PRESS RELEASES | DONATE NOW | VOLUNTEER NOW

Contact Save Babies Through Screening for questions about the content of this site or
the Webmaster for questions about technical issues related to this site.
Terms of use for this site.

Revised 2/6/2004