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

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SOMETHING TO THINK ABOUT

Many studies have been done on the economic value of comprehensive newborn screening.  But how do you measure the emotional cost of screening?  For parents and families of affected individuals, percentages mean little.  The emotional costs to families who are struck by these disorders is something that cannot be effectively measured.  Many of these families needlessly endure emotional strain that could be prevented with a simple precautionary test.  Whether they lose their child to one of these disorders or spend the rest of their life caring for a child that is physically or mentally handicapped, their lives will never be the same emotionally, economically or ethically.

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FEATURED DISORDER OF THE MONTH

The May 2001 Featured Disorder of the Month is Sickle Cell Disease.  Malik and D'Anya Donovan were both born with Sickle Beta + Thalassemia, which is a mild variation of Sickle Cell Disease (SCD). Malik and D'Anya were fortunate to be diagnosed early through Newborn Screening, because in 1987, a National Institute of Health panel recommended that all babies be screened for SCD. By 1991 Washington State had added SCDs to its newborn screening panel. Both children were started on an early treatment of penicillin to help prevent the complications and acute attacks that can occur from this disease.  View the full story by clicking here.

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MOTHER'S DAY DRIVE

Mothers Day is just around the corner and, as many of you may know, it was three years ago May 10th, that Tyler Wayne Mize died from complications of undiagnosed Galactosemia.  Many volunteers have given unselfishly of their time and resources to make sure that this does not happen to another child. Their efforts have not gone unrecognized by professionals and the media.

Through the efforts of many dedicated volunteers, pamphlets have been printed and distributed, pins have been purchased and distributed, a web site has been maintained, an on line news letter has been published, a Newborn Screening Discussion List Serve is managed, state volunteer programs have been established, the NBS Quilt project (A Celebration of Rarity) has been developed and a quarterly newsletter has been printed and mailed.  Where does the money come from to do these projects? For postage, for paper, for printing?  Money is needed from continued and new support from clubs, organizations, and corporate sponsors and from individuals like you.

It is time for all the friends of Tyler for Life Foundation, Inc. to give unselfishly too in the 1st Annual Mother's Day Fund Drive.  To continue "saving babies, one foot at a time," TFL needs your help.  Please make a tax-deductible donation today to help us continue "saving babies, one foot at a time". 

Anyone who would 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:

Tyler For Life Foundation
6340 Holborne Lane
Douglasville, GA 30134-4023

The Tyler For Life Foundation is also looking for corporate sponsors for several of our projects, including the TFL website at www.tylerforlife.com , the Handout America Campaign, the Awareness Pin Campaign, the Unity Quilt Project, "Request the Test" posters and the TFL newsletter, Tyler's Tribune.  Please contact us at 1-888-454-3353 for more information.  Many thanks to Bio-Rad Laboratories who already sponsors the TFL List Serves, including this one.

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REQUEST THE TEST POSTERS

"Request The Test" posters are now available. The 11x17 posters were designed specifically for OB/GYN and pediatrician offices. Posters will also be sent to all doctors' offices that order NBS pamphlets. Posters can be viewed on the web by clicking here. To order posters send email to kileen@tylerforlife.com or call 1-888-454-3383.  There is no charge for the posters.

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UPDATED STATE SCREENING PAGES

The Tyler For Life Foundation is excited to announce the updated "What Does Your State Screen For?" pages on the TFL website at www.tylerforlife.com .  We receive many inquires in regards to what each state screens for and what is going on in newborn screening in particular states.  Each state requires screening for different disorders and we have worked hard to see that this information is available to the lay public.  Find out what your state screens for by clicking here.

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CONTACT THE MEDIA 

This month we ask you to contact:

The View
320 West 66th St.
New York, NY 10023 
Email http://abc.go.com/theview/main.html, click on "Email us"

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GET NBS HANDOUTS

Newborn screening pamphlets entitled "A Parent's Guide to the Newborn Screening Test - The PKU Test:  It's Not Just PKU Anymore" are available to hospitals, pediatrician's offices, OB/Gyn offices, midwives, health departments & clinics, pregnancy resource centers, persons advocating for newborn screening, and any other related organizations or persons willing to distribute the pamphlets to expectant and existing families.  These handouts are available at no cost to all facilities and individuals willing to give them to their patients.  "A Parents Guide To Newborn Screening" is a universally written newborn screening pamphlet developed specifically for parents.

Download or order hard copies of "A Parent's Guide To Newborn Screening" by clicking here.

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COST ANALYSIS RESEARCH FOR COSTS AND OUTCOMES OF METABOLIC DISORDERS

Are you a parent or individual with a fatty-acid or organic acid disorder?  If so your participation is requested in a survey being done by Children's Hospital of Philadelphia.  A study is being conducted to determine the costs and outcomes for metabolic disorders with initial focus on Medium-Chain Acyl CoA Dehydrogenase (MCAD) deficiency.  Your participation in this cost survey (no matter which metabolic disorder your family is affected by) would be extremely helpful in establishing whether more contemporary methods and policies for newborn screening for metabolic disorders are cost-effective.  Please click here  for more information.

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TFL IS MOVING

The Tyler For Life Foundation's  home office will be moving May 15.  The new address for TFL after this date will be:

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.

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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

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.

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