December 2001 Online Newsletter
Welcome to the December 2001 Tyler For Life Foundation online newsletter.
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SOMETHING TO THINK ABOUT
Did you know that while you slept last night 2 babies were born
in this nation with disorders detectable through newborn screening, yet went
undetected? It's sad but true. In all, approximately 6 babies are born every
day with disorders that could be diagnosed and treated at birth, yet these
children are not. They are left to chance suffering, irreversible mental
retardation, physical impairment and even death.
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STATE SPOTLIGHT - A CLOSER LOOK AT MAINE
Since July 1, 2001, all Maine babies have been screened for:
Biotinidase Deficiency, Congenital Adrenal Hyperplasia, Congenital
Hypothyroidism, Galactosemia, Hemoglobin Disorders, Homocystinuria, Maple Syrup
Urine Disease, MCAD, & PKU.
Since July 1,Maine parents have also had to option of having their children screened for the following disorders:Tyrosinemia Type I and II, Urea Cycle Disorders, Arginineia, Argininosuccinic Aciduria, Citrullinemia, HHH Syndrome, SCAD, SCHAD, VLCAD, CPT II, Glutaric Acidemia Type I and II, Isovaleric Acidemia, Methymalonic Acidemia, Propionic Acidemia, B-MC, B-KT, & HMG.
Between July 1 and Oct. 31 4668 infants were screened. 99.63% accepted expanded screening, .36% declined expanded screening, for a total of 17 declines in this period, 9 of them from homebirths. In this time period, there were 5 out of range results - all false positives (1 Gluteric Acidemia I, 1 SCAD, 2 Tyrosinemia, 1 VLCHAD).
Thanks to Jennifer Heberer for the update.
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NEWBORN SCREENING DISCUSSION LIST SERVE:
In addition to this announcement list serve, the Tyler For Life
Foundation also hosts a Newborn Screening Discussion List Serve, where members
of the list serve may post messages to the entire list and communicate with one
another (you can not post messages to this list serve). The discussion list
serve is open to anyone wishing to communicate with others about newborn
screening issues. The Discussion List Serve receives approximately 80 posts
(emails) per month. Interested individuals can join this list serve from http://www.geneticalliance.org/mailman/listinfo/nbsdiscussion
.
Many Thanks!!!! The Tyler For Life Foundation's Newborn Screening Discussion List Serve is proudly sponsored by Bio-Rad Laboratories.
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FINDING A SUPPORT GROUP FOR YOUR DISORDER:
Support groups play a key role in making families feel that they
are not alone. These parent-based groups become an outlet to share feelings,
emotions and everyday living experiences with other families dealing with the
same circumstances. The sense of connection with comparable families is very
important for new families learning to cope with the news their loved one has a
disorder. In addition to providing adequate care, it is important that follow-up
physicians provide referrals for new families to locate existing parent-based
support groups for their disorder.
You can find a listing of disorder specific support groups and disorder definitions at http://tylerforlife.com/disorders.htm .
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NEW YEAR'S RESOLUTIONS:
With the New Year just around the corner, it's time to think
about those New Year's resolutions we all make each year. Try adding "Advocate
for Newborn Screening" to your list. You can do this in simple ways such as
sharing your story with the person behind you in the grocery store line or
visiting your state's newborn screening laboratory. Many people have become
active in advocating for newborn screening by working to educate the public and
medical professionals on the benefits of comprehensive newborn screening, but we
still have a lot of work to do. Many people are still unaware of both what
newborn screening currently is, and what it should be.
By sharing your story with your neighbor, an acquaintance, your OB/Gyn, you are putting a face and reality with the issue. It's not just another issue someone reads about in the paper or hears about on the news - it's something that happens to real people close to home. It's this kind of activity that will help our children now with these disorders and the children that will be affected by these disorders in the future.
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HOW YOU CAN HELP:
There are many ways that you can help spread the word of newborn
screening. You can help us fight for children with disorders detectable through
newborn screening by making a direct donation to support advocacy, education and
research. You may also choose to make donations in honor/memory of loved ones,
or in lieu of gifts for special occasions such as birthdays, and/or
participation in write-in United Way campaigns that benefit TFL. You can also
help by circulating information about newborn screening, participating in letter
writing campaigns, sharing your story on our website, host fundraising events,
and volunteering your time for TFL.
Tyler for Life Foundation supporters and volunteers differ in their roles, but they have a common purpose: saving babies! For more information on hosting or sponsoring a fundraising event, please contact us at fundraising@tylerforlife.com. For more information on volunteering your time, please contact our Volunteer Coordinator at volunteer@tylerforlife.com.
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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 cannot 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
(e.g., switch to or from digest mode, change your password, etc.), is at http://www.geneticalliance.org/mailman/listinfo/nbsannouncements
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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Online Newsletter Editor: Kileen Hall
kileen@tylerforlife.com
This is a publication of:
Tyler For Life Foundation, Inc.
5335 N. Helton Road
Winston, GA 30187
Toll Free: (888) 454-3383
Local: (903) 887-0259
Fax: (770) 947-8507
Email: info@tylerforlife.com
http://www.tylerforlife.com
Newborn Screening Saves Babies One Foot At A Time
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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