July 2000 Online Newsletter

SOMETHING TO THINK ABOUT
Did you know that that approximately one out of every 1,500 babies will be born with one of the disorders detectable through newborn screening?  It's true.  One of every 1,500 babies born will have a disorder that is detectable through newborn screening.  If not detected early, these disorders can cause mental retardation, physical impairment and even death.  However, with early diagnosis and treatment, these complications can be prevented in most cases.

TYLER FOR LIFE WEBSITE
The Tyler For Life Foundation's website has been a great awareness tool in helping to provide education on newborn screening.  The website has changed drastically over the last year, as have the amount of people who visit the site.  The site has had almost 8,000 visitors over the last 9 months.  The website is averaging about 885 "hits" per month.  Thank you to all those who have continued to refer people to visit the site.  Please continue to do so and we will surely see the numbers continue to rise.

IN THE NEWS
Several new NBS related articles have been released over the last month. 

·  Indianapolis Star, June 25, 2000, Infant screening is about kids, not stats, disorder victims say
http://starnews.com/articles/BABY25.ART.html

·  Heathgate.com; June 2, 2000, Medical screenings for newborns: know your options
http://www3.healthgate.com/healthy/parenting/2000/newborns/index.asp

A full list of released articles is available at the TFL website at www.tylerforlife.com under "In The News".

"Parenting" magazine is scheduled to release an article in its August issue relating to NBS as well.  It should be out within the next few weeks.  The magazine "Good Housekeeping" is also working on an NBS article that will be released later in the fall. 

HOW DO I GET MY CHILD SCREENED THROUGH CNBS 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.  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 www.tylerforlife.com under "What Does Your State Screen For In NBS?"

FEATURED DISORDER OF THE MONTH
The featured disorder and personal story for July 2000 is about a little boy named Justice who has Isovaleric Acidemia (IVA).  Justice was not screened for this disorder at birth and thus went into crisis, lying on the brink of death before doctors diagnosed his disorder.  Today, Justice is a happy, healthy little boy with lots of energy who continuously amaze doctors.  Visit the TFL website at www.tylerforlife.com under "Disorder of the Month" to view the full article.

RAFFLE WINNER
The foundation's first real fundraising campaign ended June 15.  Many thanks to all those who participated in selling and purchasing the raffle tickets.  The winner of the $100 prize was Hughlene Parmer of Tyus, Georgia.  In all 304 tickets were sold, raising $304 for the foundation.  We also want to say a special thank you to Jane Wilson of Graham, Alabama who sold the most tickets in this raffle.  Jane sold 159 tickets in all.  Thank you Jane and congratulations Hughlene.

SEPTEMBER IS NBS AWARENESS MONTH
The Tyler For Life Foundation along with numerous other disorder support groups have declared September as Newborn Screening Awareness Month.  Many events will be taking place during this month to show support for NBS.  Events include wearing NBS lapels pins everyday in September and the Handout America Campaign.

PIN PROJECT
Lapels pins are being sold in the months of July and August to help raise needed funds for the foundation and to help raise awareness of newborn screening.  The Tyler For Life Foundation along with several other support groups joined forces to sell these Awareness Pins.  The groups are hoping to sell at least 20,000 pins by the August 31 deadline.  September was declared Newborn Screening Awareness month by the groups and everyone is asked to wear a pin every day in September to show your support of NBS.   The pin project is a collaborative effort from 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, Tyler For Life Foundation, and Western NY PKU Association.  This project will be an annual event.  If you would like to participant in the pin project, whether by purchasing pins or by participating in selling them, please contact Tiffany Young at tiffany.young@unisys.com .  Many thanks to Lori Sanchez and Tiffany Young for coordinating this project.

HANDOUT AMERICA CAMPAIGN
On September 1 TFL is launching a "Handout America" campaign.  We have finished a handout about newborn screening (NBS & CNBS) entitled "The PKU Test:  It's Not Just PKU Anymore - A Parent's Guide To The Newborn Screening Test".  We are enlisting volunteers to "hand out" these "hand outs" all over the country.  These handouts are intended for expectant parents and to be displayed at doctor's offices, pediatrician's offices, OB/GYN offices, hospitals, birthing centers, mid wife offices, etc.  We would also like to encourage these forums to provide each of their expectant parents with a copy of the handout and to continue distributing these pamphlets to their patients.    If you would like to participate or would like more information, please contact the project coordinator Kileen Hall at KIVYHALL67@aol.com . 

TFL HAS A FULL BOARD OF DIRECTORS
We are happy to announce that TFL now has a full Board of Directors to run the foundation.  The current board members are Terilyn DePaolo, Kileen Hall, Eileen McMullin, Cliff Mize, Tera Mize, Wendy Nawn, Gina Revenski and Lori Sanchez.  We expect to add more board members to the board within the next few months.  There will also be a web page added to the TFL website where you can learn more about the TFL Board of Directors.

VOLUNTEERS NEEDED
The Tyler For Life Foundations is always in need of volunteers to help in advocating for newborn screening.  If you are interested in helping, please contact our Volunteer Coordinator, Terilyn DePaolo, at trose@olypen.com .  Whether you have alot of time to devote to the cause or just a little, we need you!!!!  We want to say a very special THANK YOU to those of you who already volunteer your time to help save our children.  THANKS TO ALL!!!!!!!

Tyler For Life Foundation, Inc.
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
Phone:  (888) 454-3383
Email:  info@tylerforlife.com

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