August 2000 Online Newsletter

SOMETHING TO THINK ABOUT
Did you know that children can be screened for over 40 manageable disorders at birth through newborn screening, but that most states only
require screening for between 3 to 8 disorders?  Screening methods using both conventional and tandem mass spectrometry methods is referred to as
comprehensive or expanded newborn screening and can detect more than 40 disorders when specimens are screened using all available methods.  Only
three states are currently using expanded screening for the full array of disorders.  These states are Wisconsin, North Carolina, and Massachusetts.
Expanded screening is available in other states on a voluntarily basis through some hospitals.  Please contact your local hospital to find out if
they are set up to offer expanded screening.
 
AAP TO RELEASE STATEMENT
The American Academy of Pediatrics is scheduled to release a statement entitled "A Blueprint for the Future of Newborn Screening" this month.
The American Academy of Pediatrics convened an expert panel to address issues relevant to newborn screening and state newborn screening programs.
This summary document reviews some of these successes and challenges and offers recommendations for the future. This report will be published as a
Pediatrics supplement in August 2000.  The document has not been made available online to date, but we will alert everyone as soon as it is
released.
 
UREA CYCLE DISORDER CONFERENCE
The National Urea Cycle Disorders Foundation Annual Family Conference will be held August 18, 19 & 20, 2000 at the Doubletree Hotel in Philadelphia,
PA.  For information contact Mindy Rosen at miniminoo@aol.com  or visit the NUCDF website at www.nucdf.org .  The conference is free for NUCDF members.
Cost is $50.00 per person for non-members.  The NUCDF will hold a press conference at the opening of the meeting on Friday morning to announce
some exciting "Baby Saving" news in the NBS world.  Space is still available to attend.  Be there or be square.
 
FEATURED DISORDER OF THE MONTH
Screening for PKU has been done in the United States for over 30 years, so how are PKU kids still being missed?  Read more about "The Story Of Tyler
Wooldridge", a child who suffers from late diagnosed PKU.  Tyler Wooldridge is the Tyler For Life Foundation's Featured Story for August
2000.  Full article available at www.tylerforlife.com  under "Featured Disorder of the Month".
 
A CHALLENGE
The Tyler For Life Foundation is challenging all newborn screening advocates to get at least two NBS related articles written or stories
aired in their local paper, magazine, or TV news in the month of September for Newborn Screening Awareness Month.  Many advocates have already
stepped up to the challenge and September looks to be a busy month for NBS awareness.
 
AWARENESS LAPEL PINS
Newborn screening awareness lapel pins are still available.  Everyone is asked to wear the pins everyday in September to show your support of NBS.
You can get pins from the Tyler For Life Foundation with any donation. Ordering information is available at www.tylerforlife.com , under NBS
Awareness Lapel Pins.
 
Support group members can purchase the pins from their support groups. Members of the Children's PKU Network, Florida PKU Parents, FOD Family
Support Group members, Kansas PKU Network, Magic Foundation, Mid Atlantic Connection for PKU & Allied Disorders, Mitochondrial Disease Outreach
Center, MSUD Family Support Group, National Coalition for PKU & Allied Disorders, National Urea Cycle Disorder Foundation, New England Connection
for PKU & Allied Disorders, the Organic Acidemia Association, Parents of Galactosemic Children, PKU Organization of Wisconsin, PKU Parents of
California, and Western NY PKU Association should contact your group directly to obtain pins.
 
All the groups combined have already sent out almost 10,000 pins.  This is half way to the 20,000 goal.
 
IN THE NEWS
Several new NBS related articles have been released over the last month. 

Parenting Magazine; August 2000 issue
The Price Of Life (not available online) 
 
Baby Talk Magazine; August 2000 issue
(not available online) 
 
dnaMD.com; July 29, 2000
Could Expanded Newborn Screening Save Your Baby's Life?
http://www.dnamd.com 

Nashville Parent Magazine, July 2000 issue
We COULD Save More Babies' Lives 
http://www.parentworld.com/features/0700/save_babies.html 

The Record; June 29, 2000
Newborn testing assessed 
http://cgi.bergen.com/pparent/ppar062920000629.htm 
 
NBS ADVOCACY DISCUSSION GROUP
The Tyler For Life Foundation hosts a discussion group for persons wanting to communicate with one another about newborn screening
advocacy. If you are interested in signing up for the discussion group mailing list, you can join by sending a blank email 
to NBSAdvocacy-subscribe@listbot.com   
 
ADVOCACY PACKAGE
Gina Revinski of the FOD Family Support Group and the Tyler For Life Foundation has put together an advocacy package that contains helpful
materials for advocating for 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.  Advocacy packages will be
available August 14.  
 
To order a package please send your name, mailing address, and phone number to:
 
Tyler For Life Foundation
6340 Holborne Lane
Douglasville, GA  30134
 
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.
 
DOWNLOADABLE NBS PAMPHLET
An informational NBS/CNBS pamphlet written specifically for parents is  now available to download online.  You can download the pamphlet from the
Tyler For Life Foundation website ( www.tylerforlife.com ) under "Get Newborn Screening Pamphlets".
 
HELP SUPPORT TFL WHEN YOU SHOP ONLINE
You pay the same low prices, and TFL gets a generous commissions of up to 14% of your purchase price. Hundreds of merchants to choose from including
Amazon.com, CDNOW, Disney, L.L. Bean, Florist.com, Hallmark, Office Max, JcPenney, Staples, Dell Computers, Toys-R-Us, Lens Express, and many more.
To participate, you will have to visit the merchants from our website.  You can do this by going to www.tylerforlife.com , clicking "Help Support TFL
While You Shop Online" and then choose the merchant website you would like to visit.
 
Tyler For Life Foundation, Inc.
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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