May 2000 Online Newsletter
SOMETHING TO THINK ABOUT
Discrimination is not acceptable in any shape or form in our society today.
However, genetic discrimination is accepted as a daily occurrence in the United
States. Technology exists to presymptomatically screen for numerous inherited
disorders, however, states are allowed to pick and choose which disorder they
screen for in the NBS panel. Why is it acceptable to allow a child born with
particular disorders to live a healthy, normal life in one state, OR die or
suffer suffer severe mental retardation and/or physical disabilities in another?
Screening is available to presymptomatically detect children for an array of
disorders, yet each state picks and chooses which disorders it will screen for.
The cost of these disorders when left untreated are enormous, both in human
suffering and in economic terms, IN ANY STATE.
BE SURE TO WATCH
The popular television show "ER" will air a newborn screening related
episode on Thursday, May 4. The show will air at its regular time on your local
NBC station. The episode's title is "Loose Ends". The storyline will
be an infant who comes into the emergency room and dies from a metabolic
disorder, something all too familiar to parents of children with metabolic
disorders. The story will touch on the fact that a newborn screening test would
have detected the child's disorder and that the newborn screening tests are
seldom used. The show's producer have agreed to air 90 seconds of information on
newborn screening and post the Tyler For Life Foundation website on the screen
as a reference for more information. This will occur immediately after the
show.
NBS ADVOCACY DISCUSSION GROUP
The Tyler For Life Foundation is now hosting 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, please visit
our website at www.tylerforlife.com. You can subscribe to the discussion group
mailing list at the bottom of the home page under "Join Discussion Group
List".
IN THE NEWS
In April numerous articles were released that related to newborn screening and
disorders detectable through it. A complete list is available from the website,
www.tylerforlife.com, under "In the News". Be sure to take a look at
the list to ensure you haven't missed reading any.
DISORDER OF THE MONTH
This month's "Featured Disorder" is Galactosemia. The personal
story exhibited for May will be the story of Tyler Mize. Although, many of you
already have read Tyler's story on the website. Tyler's family has written a
personal note to be shared in the featured story this month. Tyler's second
birthday would have been yesterday, May 1. Galactosemia is hereditary disease
that is caused by the lack of an enzyme required to digest galactose, a sugar
product of lactose. Persons with galactosemia can not properly digest any foods
containing galactose, such as milk products. Initial treatment would be to put
affected infants on a soy-based formula since regular formula and breast milk
both contain galactose. When not detected quickly, galactosemia can cause mental
retardation or death. As persons with galactosemia get older they may encounter
delays in speech and females suffer from early ovarian failure in adolescence.
Nevertheless, when detected early and properly treated, persons with
galactosemia live virtually normal lives. Treatment for galactosemia is strictly
dietary and a diet without galactose must be followed throughout life.
BE SURE TO WRITE
This month we ask you to submit your personal story to:
My Turn Editor, Newsweek 251 West 57th Street New York, NY 10019-1894 fax: (212) 445-4120 (Attn: My Turn Editor) e-mail: letters@newsweek.com The essay should be 850-900 words, personal in tone, and about any topic. You may include a picture. It doesn't have to be well-written. It will show we are not so rare together. You may request a sample letter by replying to this email with the words "SAMPLE LETTER - Newsweek" in the subject line. Please send your letter by May 31, 2000. Thank you to all of you who participated in writing Dateline last month.
HAND OUT AMERICA CAMPAIGN
On July 1 we are launching our "Handout America" campaign. We are
working on a handout about newborn screening (NBS & CNBS) and are hoping to
give them out all over the country. We are enlisting the help of volunteers to
hand out these pamphlets to doctor's offices, OB/GYN offices, hospitals,
birthing centers, mid wife offices, etc. If you are interested in helping hand
out these pamphlets, please send you name, address, telephone number and the
number of pamphlets you would like to hand out to comments@tylerforlife.com
JUST VISITING
As of the date of this
publication, the Tyler For Life Foundation website has had 5557 "hits"
to the site since September 28, 1999. That equals out to almost 800 visitors a
month!!! We expect to keep seeing the number rise. With this many visitors to
the site, we feel that it really is a vital tool in getting the word out. Many
thanks to everyone who refers people to our site for more information.
NEW BOARD MEMBERS
We are excited to announce the addition of 3 new board members to the Tyler For
Life Foundation's Board of Directors. We would like to welcome: Kileen Hall New
Mexico Mom of two children born with a fatty oxidation disorder (FOD) Eileen
McMullin Connecticut Mom of child with a fatty oxidation disorder (FOD) Terilyn
DePaolo Pennsylvania Aunt of child with IVA
HOW YOU CAN HELP
The Tyler For Life Foundation is in very much in need of volunteers and
financial supporters. The foundation is growing drastically and quickly becoming
a leader in newborn screening issues. To keep up, we must depend on continued
and new support, both financial and volunteering, from individuals, clubs,
organizations, and corporations. If you are interested in volunteering, visit
our website under "Volunteer" which lists all the positions we need
volunteers for. Please take a look at this page, and see if there is something
that yourself or someone you may know can help us with.
To contribute financially, please make checks payable to the Tyler For Life Foundation, 6340 Holborne Lane, Douglasville, GA 30134. Thank you for your support. It is what allows us to continue our efforts. If you would like to encourage your employer to make a contribution and need more information about the Tyler For Life Foundation, please contact us at the information listed below.
Tyler For Life Foundation, Inc.
6340 Holborne Lane
Douglasville, GA 30134
Phone: 888-4-LIFE-83
Local: (770) 947-3638
Email: comments@tylerforlife.com
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