November 2001 Online
Newsletter
Tyler For Life Foundation
www.tylerforlife.org
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SOMETHING TO THINK
ABOUT
Did you know that children are born everyday with disorders detectable
through newborn screening, yet they go undetected because their state doesn't
screen for their disorder? Many states are slow to implement additional
screenings stating follow-up issues. These states cite that there must be
follow-up in place before screening can take place. Many parents balk at this as
these children are born everyday, regardless if the state has a formal follow-up
protocol in place or not, and receive medical care.
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WORD OF THE MONTH:
newborn screening
Newborn screening is a test performed shortly after birth to detect for
serious hereditary disorders. State law mandates the newborn screening test in
most states. Although the test is capable of screening for numerous disorders,
each state chooses which disorders it will screen for. Most states currently
screen for between 3 and 8 disorders. There are some states that screen for as
many as 30 disorders.
Comprehensive newborn screening is the term used to describe newborn screening test that screens for all disorders detectable through the test.
Expanded newborn screening is the term that is used to describe the implementing of additional disorders to the testing panel.
Universal newborn screening is nationally mandated testing of the same disorders in each state.
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VOLUNTEER
NEEDS
From the Volunteer Department
In this time of uncertainty in our nation babies continue to be born and to suffer the consequences of inadequate newborn screening. Many thanks to all of our volunteers who contribute their energy and money to the advancement of NBS even though tragedy and safety weigh heavily on our minds.
Assistant Librarian:
Because TFL's library of testimonies is growing; we are in need of an Assistant
Librarian to help manage the material. Families who submit their stories and
photographs are now required to complete a release form authorizing the
foundation's use of their testimonies and pictures in TFL publications and
awareness projects. The Assistant Librarian will format the collected stories in
MSWord and help to gather the permission-to-use slips. Because these releases
are needed from past contributors of testimonies, too, this volunteer position
will be rather busy at first. It should settle down to a commitment of 4 to 6
hours per month once the backlog is organized. Please contact Teri DePaolo at teri@tylerforlife.com
to volunteer as assistant in this department.
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ADVOCACY PACKETS
AVAILABLE
An advocacy packet that contains helpful materials for advocating newborn
screening, including recent press articles, a complete list of NBS related
articles, information from NeoGen & Baylor, a "How To Advocate"
guide sheet, personal stories of families affected by newborn screening, and
much more.
This informational packet is designed to help newborn screening advocates get started. A suggested donation of $5 is requested for each package to help cover costs of producing and mailing the packages. All checks should be made payable to the Tyler For Life Foundation. To order a packet please send your name, mailing address, and quantity of packets need along with your check or money order payable to:
Tyler For Life Foundation
5335 N. Helton Road
Winston, GA 30187
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ADVOCACY POINTERS
The efforts of families are clearly making a difference in newborn screening
and our voices are being heard. Many families are taking the initiative to write
legislators, public health agencies and the media regarding newborn screening.
One of the biggest points that consumer "pros" push is that letters are most effective when handwritten and sent via regular mail (not email) Most consumers who are accustomed to writing their legislators and have had good response have found that regular mail is the best way to send these letters as Senators and Representatives are e-bombed every day and e-mail is not as effective.
Another good point is to be up front. The first sentence of your letter should state exactly what you want. A "pro" consumer advocate recently spoke at the Genetic Alliance conference and said that she and her group got on the Rosie O'Donnell Show by writing one letter. The letter said, "Dear Rosie, Can "Person's Name" come to your show and speak about XX disorder and the XX organization." This group has had much success with such short and sweet letters. Active families are what are making the difference in newborn screening and helping to keep it in the public eye. Along with the pointers above, there is only one other thing to remember when writing letters for newborn screening - every letter counts!!
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JOIN THE TYLER'S TRIBUNE MAILING
LIST
The TFL newsletter, Tyler's Tribune, is published quarterly in January,
April, July and October of each year. We have received excellent feedback from
the newsletter and are very excited about the next edition, which is due out
again in January. Joining the mailing list for Tyler's Tribune must be done
separately from this email list by filling out the appropriate form on our
website. If you haven't filled out the form already, you can do so at http://www.tylerforlife.com/join%20the%20tfl%20mailing%20list.htm
.
You can also make changes to your mailing address, name, etc. from this same webpage.
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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 (eg, 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
Fax: (770) 947-8507
Email: info@tylerforlife.com
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.
Help us fight for children with disorders detectable through newborn screening by making a donation to support advocacy, education and research. Every gift, whether large or small, will help us to protect more children affected by these disorders and will help them to live normal lives. Without proper screening, these children can suffer lives of mental retardation, physical disability or even death. With your help, we can continue to help save babies one foot at a time.
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