October 2001
Online Newsletter
Welcome to the October 2001 edition of the Tyler For Life Foundation's Online
Newsletter.
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SOMETHING TO THINK ABOUT
A recent article in Clinical Chemistry reported that metabolic autopsy could
now provide answers to some sudden infant death syndrome (SIDS) cases. In the
July 2001 issue of Clinical Chemistry researchers report the ability to identify
the cause of death in previously unexplained SIDS cases through the use of a
newborn screening method, Tandem Mass Spectrometry (MS/MS). This is the same
screening many want to see in place at birth through newborn screening, thus
preventing these deaths.
View the clinical chemistry article at http://tylerforlife.org/Download%20Documents/Clinical%20Chemistry.pdf
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SIDS AWARENESS MONTH
October is National SIDS Awareness month. Over 100,000 children have died
from SIDS in the last 25 years. It is estimated that 5% of all SIDS cases are
actually cases of Fatty Oxidation Disorders (FOD); disorders detectable through
expanded newborn screening. This means that over 5,000 SIDS deaths could have
been prevented and were misdiagnosed as SIDS.
Almost four million babies a year are born in the United States. About 3,000 of those babies will die from SIDS each year. And since screening for Fatty Oxidation Disorders is still not common practice in the United States, 150 of those SIDS cases will die from preventable deaths from disorders detectable through newborn screening.
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NEED HELP REACHING THE SPECIALISTS IN YOUR DISORDER?
The availability of charitable, long-distance medical air transportation is
rapidly growing in the United States. The National Patient Travel Helpline
provides information about all forms of charitable, long-distance medical air
transportation and provides referrals to all appropriate sources of help
available through the Angel Flight America Network. More than 18,000 financially
challenged patients were served during calendar year 2000. The purpose of this
organization is ".... to ensure that no financially-needy patient is denied
access to distant specialized medical evaluation, diagnosis and treatment for
lack of a means of medical air transportation." The National Patient Travel
Helpline provides a variety of services to those seeking a way to travel
long-distances for specialized medical evaluation, diagnosis and treatment. This
organization already provides transport for many of the patients participating
in the metabolic research study being done by Charles Roe at Baylor University.
The National Patient Travel Helpline can be reached on 1-800-296-1217. It is available 24 hours a day, seven days a week. Information can also be found on the web at http://www.patienttravel.org .
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HOLD A FUNDRAISER
Help Save Babies One Foot At A Time by holding a fundraiser. The need for
continued awareness of newborn screening has created another important need -
funding. Tyler for Life Foundation (TFL) has grown substantially in the past two
years in terms of media attention, professional attention, awareness programs
and volunteers. We have accomplished much, yet we have so much more to
accomplish. We have many ideas and not enough resources to implement ideas. Too
many ideas and not enough funding is a good problem to have, as it shows we are
growing. Nevertheless, it is a problem with which we need your help.
We ask advocates to hold fundraisers to benefit Tyler for Life Foundation's ongoing mission to improve the lives of babies through prevention of mental retardation and death caused by metabolic disorders detectable through newborn screening. Fundraisers can be holding an event such as a walkathon, yard sale, community yard sale, golf tournament, softball tournament, or simply passing out our general-purpose fundraising flyers.
To participate, please contact Marcia Dunahoo, local (903) 887-0259, or by email at marcia@tylerforlife.com . All types of fundraising are welcome.
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PRO BONO CPA NEEDED
Tyler for Life Foundation needs an independent, licensed, and insured CPA to
do annual audit of our books. Books and accounting are in excellent condition.
The audit should not take very long to complete. Please contact Wendy Nawn, CPA,
at (610) 251-9876 or via email at wendy@tylerforlife.com
.
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FEATURED DISORDER OF THE MONTH
The featured story for October 2001 is Ella Heberer, who has Tyrosinemia Type
I. Ella was not screened at birth for Tyrosinemia and went into liver failure
when she was 3 months old. Customarily liver transplantation was the only
treatment for Tyrosinemia Type I. However Ella was started on a low protein diet
and a new medication called NTBC . Ella is now almost 3-years-old and seems to
still be responding very well to diet and drug therapy. View the full article at
http://tylerforlife.org/Featured%20Disorders%20of%20the%20Month/October%202001.htm
.
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UPCOMING EVENTS
October 1-30
NBS Unity Quilt Viewing
Tyler For Life Foundation
More Info: 1-888-454-3383
Web: www.tylerforlife.org
Virtua Memorial Hospital Burlington County
Mt Holly, New Jersey
October 14-17 **This event has been postponed until July 2002**
Connections 2001 - Biennial Partnership Conference
National Healthy Mothers Healthy Babies Coalition
Offering NBS session
More Info: (813) 974-6682
Web: www.hmhb.org
Clearwater Beach, Florida
November 3 & 4
2nd International Professional Conference and Maternity & Baby Fair
Childbirth And Postpartum Professional Association (CAPPA)
Phone: 1-888-548-3672
University of Alabama
Birmingham, AL
November 4-7
20th Annual Education Conference
National Society of Genetic Counselors
Offering NBS session & course on Counseling & Management of Metabolic
Disorders
Web: www.nsgc.org
Washington, D.C.
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ABOUT THIS LIST SERVE
You are receiving this email because your email address is subscribed as a
member of the Newborn Screening Announcement List Serve hosted by the Tyler For
Life Foundation - A Parents Resource on Newborn Screening. Messages can
not be posted to this list serve as it is used for announcement purposes only.
Please do not respond to this message. General information about this list
serve, including if you want to unsubscribe or change your options (eg, switch
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If you have additional questions or comments about the list serve, the List Master can be contacted at teri@tylerforlife.com .
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This is a publication of:
Tyler For Life Foundation, Inc.
5335 N. Helton Road
Winston, GA 30187
Toll Free: (888) 454-3383
Fax: (770) 947-8507
Email: info @tylerforlife.com
http://www.tylerforlife.org
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 at http://www.guidestar.org/helping/donate.adp?ein=58-2509450 . 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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