March 2001 Online Newsletter

March 2001 Online Newsletter
Welcome to the March 2001 edition of the Tyler For Life Foundation's online newsletter.

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SOMETHING TO THINK ABOUT

Did you know that many discharge nurses advise their patients to leave the hospital without the newborn screening test if the baby is less than 48 hours old?

It's true that this happens, and it is against the law in most states. Most states mandate that babies are screened at discharge and leaving the hospital without the test is a violation of state law and against medical advice. Infants allowed to leave without the screening may never be brought back to receive a newborn screening test and/or the child may go into metabolic crisis before the test can be done at a later date. Some early striking disorders can be picked up even before a baby is 24 or 48 hours old. And in most states the only reason that a child can leave without the screening is if the test is against the parent's regilous belief - no other reasons are acceptable. All babies should be screened at discharge regardless of the baby's age with repeat screening scheduled as required. This opportunity to do the test may be the only one. Don't miss it.

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FEATURED DISORDER OF THE MONTH

Josias (Joey) Wilson, who has Glutaric Acidemia Type I (GA-I), is the March 2001 featured disorder of the month. GA-I is detectable through expanded newborn screening using tandem mass spectrometry. Because Joey was not screened through expanded newborn screening, even though he was born only minutes from one of the 2 laboratories that offered the screening in the US at that time, his GA-I went undiagnosed until he was 7 months old. By this time Joey had suffered irreversible brain damage leaving him unable to ever walk, talk or even swallow. He is fed through a tube in his stomach and his prognosis is very dim. Dr. Holmes Morton of Pennsylvania treats many Glutaric Acidemia children and has a high success rate when they are screened at birth.

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I CAN CROCHET

An "I Can Crochet" event on March 10 at the Tyler Mall in Tyler, Texas, will promote newborn screening while introducing people to the joy of crocheting. The event is directed by Tyler for Life Foundation volunteer, Deborah Levy-Hamburg, who is responsible for design acquisition for Annie's Attic, sponsor of the crochet event. Deborah's son Christian died in 1984 from undiagnosed MSUD at the age of 15. Deborah was drawn to Tyler for Life because of her need to share Christian's story and to promote NBS, which today can spare children from the suffering her son experienced. A key promotional element of "I Can Crochet" will be miniature booties affixed to pins to call attention to NBS. These mini-booties were crocheted by volunteers from Annie's Attic's customer base. Also, the company has published a crochet pattern book called "Pretty Baby Booties" which contains Christian's story and information about TFL. Further evidence of Deborah's outreach for NBS awareness can be found at www.needlenetclub.com.

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CONTACT THE MEDIA

This month we ask you to contact:

Rosie O'Donnell

Palm Beach Post-2751 S. Dixie Hwy.

WPB, Fl 33405

Email Address: lp@pbpost.com

TheR0SIE1@Aol.com

Please share the story of your family member together with all of us, to help us get the attention of a national media show. Professionals are encouraged to share interesting experiences. National TV Show suggestions
are welcomed, along with contact information.

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A CHALLENGE

The Tyler For Life Foundation is challenging all newborn screening advocates to get at least two NBS related articles written or stories aired in their local paper, magazine, or TV news in the month of March. Many advocates have already stepped up to the challenge and March looks to be a busy month for NBS awareness.

A tremendous number of articles have been released over the last year that relate to newborn screening
and disorders detectable through it. A complete list is available at http://tylerforlife.com/in%20the%20news.htm. Be sure to take a look at the list to ensure you haven't missed reading any.

Many thanks to all the dedicated volunteers, NBS advocates, and affected families who work so hard to keep NBS related stories broadcast to the lay public through the media. One of the key issues in newborn screening is awareness. Great work!

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MAILING LIST

The first ever edition of Tyler's Tribune went out last month. We have received very good feedback from the newsletter and are very excited about the next edition, which is due out in April. Many thanks to our editor, Teri DePaolo - IVA aunt from Washington state, for her dedication in this project.

If you haven't filled out the form to join the snail mailing list already, you can do so at http://www.tylerforlife.com/join%20the%20tfl%20mailing%20list.htm

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HAVE A HEART FUNDRAISER

The results of the 'I Gave My Heart to A Baby' window clings project last month was phenomenal. It exceeded our best expectations. Many thanks to the project committee, Marcia Dunahoo, Janine Clay and Diana Wilson-Hancock a/k/a "Star" for all their help in this project. A special thank you to Mindy Rosen and friends of the National Urea Cycle Disorder Foundation who had a special fundraiser with the clings and raised over $900 for TFL.

Clings are still available by sending your name, mailing address, quantity, and check/money order made out to
Tyler for Life Foundation in the amount of $40.00 per pack of 20 clings (to be sold at $2.00 each) to:

    Janine Clay
    844 Prospect Ave.
    Somerset, PA 15501

For more inforamtion, please contact the project cooridnator at janine@tylerforlife.com

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UPCOMING EVENTS

March 1-4
American College of Medical Genetics
Annual Clinical Genetics Meeting
Phone: 856.423.7222, ext. 235
Web: www.faseb.org/genetics/acmg
Hyatt Regency Miami
Miami. FL
Hotel: (800) 233-1234

May 4 & 5
National Coalition for PKU & Allied Disorders
1st Biennial NCPAD Conference
Phone: (877) 996-2723
Web: www.pku-allieddisorders.org
Embassy Suites
Dublin, OH

May 6-9
Association of Public Health Laboratories
Newborn Screening and Genetic Testing Symposium
Phone: (202) 822-5227 x220
Web: www.aphl.org
Hilton North Raleigh
Raleigh, NC
Hotel: (919) 872-2323

June 21
2nd Annual X-linked Golf Classic presented by NUCDF
National Urea Cycle Disorder Foundation
Contact Person: Kirsta Johnson
Phone: (800) 38NUCDF
Web: www.nucdf.org
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 & www.nucdf.org
Marriott - Medical Center
Houston, TX
Hotel: (713) 796-0080

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This publication is presented by:

Tyler For Life Foundation, Inc.
6340 Holborne Lane
Douglasville, GA 30134
Email: info@tylerforlife.com
Phone: (888) 454-3383
Local: (770) 947-3638
Fax: (770) 947-8507
Dedicated to Raising the Awareness of Newborn Screening and Related
Disorders
For more information about our efforts, please visit
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

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