December 2000 Online Newsletter

SOMETHING TO THINK ABOUT
Did you know that they are only 2 comprehensive newborn screening programs in the entire United States?  They are the Massachusetts Screening Program and NeoGen Screening.  These are the only two screening programs that currently screen for disorders detectable through tandem mass spectrometry (all disorders) and conventional methods.  Although several other state programs currently use tandem mass spectrometry in its NBS panel, they do not screen for all the disorders detectable it.

FEATURED DISORDER OF THE MONTH
Even if disorders are screened for, it doesn't always mean that the disorder will be caught.  Andrea Stoufer knows this all too well.  Laboratory error caused the missing of her son's congenital adrenal hyperplasia (CAH).  Conner is the Tyler For Life Foundation's Featured Disorder of the Month for December 2000.  View the full article at http://tylerforlife.com/Disorder%20of%20the%20month%20December%202000.php

PLEASE CONTACT MEDIA
This month we ask you to contact The Learning Channel and urge them to do a piece on comprehensive newborn screening for over 30 serious metabolic disorders.  Please call, write or email your personal story (and pictures if possible) to:

The Learning Channel (TLC)
7700 Wisconsin Ave.
Bethesda, MD 20814
Phone:  (301) 986-1999
Website:  http://tlc.discovery.com 
Email:  john_buffalo@discovery.com

HOLIDAY CARDS
Holiday cards are still available from Tyler for Life Foundation.  Please help support a good cause and purchase your holiday cards from Tyler for Life Foundation.

Cost is $10 per box of 20 cards, plus shipping.  Each box includes coordinating envelopes.  Payment for cards is due upon receipt of the merchandise.  You will be billed with your order for all charges.  Orders placed by 5:00 p.m. Eastern-Standard Time will be delivered in 3 business days. 

You can order the cards, view a copy of the card, and find out more information on the TFL website at http://www.tylerforlife.com/holiday%20cards.htm

MAILING LIST
The Tyler For Life Foundation is excited to announce that a snail mail newsletter will be one of our newest projects.  The first issue is scheduled to come out in January 2001.  The hard copy newsletter will contain different information than the online newsletters. 

You can sign up for our mailing list from the TFL website at http://www.tylerforlife.com/join%20the%20tfl%20mailing%20list.htm

If you want to be included on this mailing list, everyone will need to re-sign up, even if you are already a member of the email list (this list).  We will need a mailing address to include you on the regular mailing list, which was not collected when you signed up for this email list.  Please take the time to visit the website and fill out the form today so that you will be included on the newsletter mailing list.

VOLUNTEERS
We need people to handle numerous things, ranging from volunteering a few hours a month to a mere few minutes. We need people to do things as simple as proof our website for typographical errors or mail out information to people requesting it to people to write our monthly newsletter or be the TFL state contact in your state to keep up with what's going on in NBS in your state. Depending on your availability you can decide what task is best for you.

We have many other positions that we need volunteers to help with. If you are interested in volunteering to help with some of these tasks, please contact our volunteer coordinator directly at volunteer@tylerforlife.com. She will provide you with a list of tasks we currently need help with.

Please visit our volunteer web pages at http://members.tripod.com/~tyler4life/index.phpl for a full listing of the tasks we need help with.

STATE COORDINATORS NEEDED
The Tyler For Life Foundation is currently setting up state coordinators and committees to help advocate for NBS in each state. If you are interested in volunteering to be the TFL representative for your state, please contact our National NBS Program Director, Tiffany Young at tiffany@tylerforlife.com .

These committees consist of 2-3 contact people for each state who represent the Tyler For Life Foundation in that state. Responsibilities include learning about the NBS program in your state, becoming actively involved in the NBS program there, and providing quarterly reports to TFL about what is going on in NBS in your state. TFL will use the information you provide to us to compile a list of disorders that are screened for in each state, announcements on what states are planning to implement expanded screening, etc.

NBS DISCUSSION GROUP
You can join in on the Newborn Screening Discussion group by sending an email to subscribe-NBSAdvocacy@listbot.com .  The list serve is open to persons, both medical professionals and consumers, interested in newborn screening advocacy.

HOW DO I GET MY CHILD SCREENED THROUGH MS/MS IF MY STATE DOESN'T OFFER IT?
Many states are currently considering offering expanded or comprehensive (CNBS) newborn screening using tandem mass spectrometry.  However, to date, only a few states are currently providing this comprehensive screening using MS/MS.  If your state does not offer CNBS, you can arrange to have the testing done yourself by contacting one of the laboratories who offer expanded newborn screening to the public (below).  If you are interested in having expanded newborn screening done on your child, contact one of the laboratories listed below for a free resource and testing kit.  The expanded newborn screening kit can be done at the same time your state's mandatory newborn screening test is done.  Or if your child is already born, the test can be performed at your hospital, doctor's office, or local health department.  Cost for the test is approximately $25.

Baylor University Medical Center
Phone:  1-800-4-BAYLOR
http://www.baylorhealth.com/newbornscreening/

NeoGen Screening
Phone:  1-800-892-1288
http://www.neogenscreening.com/

Each state screens for different disorders in its newborn screening panel.  Most states currently screen for between 3-8 disorders.  To find out what your state screens for in it NBS panel, visit the Tyler For Life Foundation's website at http://www.tylerforlife.com/state%20by%20state%20listing.php or the American Academy of Pediatrics' U.S. National Screening Status Report (July 2000) at http://www.aap.org/advocacy/releases/augscreenreport.php .

HELP SUPPORT TFL WHEN YOU SHOP ONLINE
You can now shop on-line and benefit the Tyler For Life Foundation at the same time! Visit our new mall at http://www.tylerforlife.com/help%20support%20TFL%20when%20you%20shop%20online.htm and shop at your choice of 140 merchants.

You pay the same low prices, and we get a generous commission of up to 14% of your purchase price. Your shopping is secured, and your privacy is fully respected. Shop with merchants like Amazon, CDNOW, Office Max, The Disney Store, Dell Computers, L.L. Bean, Florist.com, America Online (AOL), Baby Center.com, Lens Express, PetSmart, IBM, Birthday Express, Time Magazine, Checks Unlimited, Staples and many more.

This publication is presented by:
Tyler For Life Foundation, Inc.
6340 Holborne Lane
Douglasville, GA  30134
Email:  comments@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

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