November 2000 Online Newsletter
SOMETHING
TO THINK ABOUT
November is a time of thanksgiving for all the wonderful things we all
have to be thankful for. This is
why the Tyler For Life Foundation has chosen this month to show our appreciation
to all the people who work to see that newborn screening happens.
TFL has allotted 50 NBS awareness pins per state to be given to NBS
personnel as a symbol of our appreciation for all the life-saving, life-altering
work that they do. These pins are
attached to a special appreciation card that conveys our gratitude for their
work.
TFL is looking for volunteers who will take the time to visit their state laboratories and NBS administrative offices to give out the pins. We hope this will allow the NBS personnel to meet the people they touch everyday since all most of them see are filter paper cards with ID #'s. We hope, by having affected families deliver these appreciation tokens, it will convey to them the sincere appreciation we have for all NBS staffs do to help our children.
If you are interested in helping to give out these pins,
please contact tiffany@tylerforlife.com
to register.
PLEASE
WRITE
Each
month we will ask everyone to write certain places to encourage him or her to do
a story. This
month we ask you to take the time to write the following media outlet request
that a NBS article be presented. It's
also a good idea to share your personal story as well.
Please
write to:
Woman's
World Magazine
270 Sylvan Ave.
Englewood Cliffs, NJ 07632
Attention: Editor Stephanie Saible
Phone (201)
569-0006 ext 220.
Email: mailto:DearWW@aol.com
TFL
FAMILY CONNECTIONS MESSAGE BOARD
A message board where
families or individuals with the same disorder can communicate and share
information with one another has been added to the TFL website.
The intended use of this message board is to allow families and
individuals to "connect" with others touched by the same disorders.
HOLIDAY
CARDS
Holiday
cards are available from Tyler for Life Foundation.
Please help support a good cause and purchase your holiday season cards
from Tyler for Life Foundation. Cost
is $10 Per box of 20 cards, plus shipping.
Each box includes coordinating envelopes.
You can order the cards from on the TFL website, www.tylerforlife.com,
under holiday cards or by contacting the project coordinator at cards@tylerforlife.com.
More information on the cards is
available on the TFL website as well.
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. You can sign up for
our mailing list from the TFL website, www.tylerforlife.com,
under The 'Join Our Mailing List' icon.
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.
FEATURED
DISORDER OF THE MONTH
Keri
Calisto, a Florida mother of a
child with LCHAD, shares her experiences with raising a child with LCHAD, and
all that she, her family and her child went through to learn of this diagnosis,
which could have been made at birth through expanded newborn screening.
Visit www.tylerforlife.com
under the 'Featured Disorder of the Month' icon to view the entire story.
FEATURED
DISORDER OF THE MONTH STORIES
The
Tyler For Life Foundation is looking for families (or individuals) who are
willing to share their stories as Featured Disorder of the Month.
If you are willing to share your story, please email your name, child's
name (if applicable), disorder name, contact information, and a brief paragraph
about the individual with the disorder detectable through NBS to tera@tylerforlife.com.
AWARENESS
PINS
Awareness
lapel pins are still available if anyone still would like some.
You can order them from Tiffany Young at tiffany@tylerforlife.com.
More information is available on the TFL website under 'NBS Awareness Lapel Pin
Campaign'.
NBS UNITY
QUILT
We are very excited to announce the
commencement of a new project that will involve families from all disorders in a
unified effort.
The
Tyler For Life Foundation will be collecting quilt panels from families with
children who have disorders detectable through newborn screening for a NBS Unity
Quilt. This Quilt will allow
families to celebrate and share the lives of their children who were born with
these disorders. Including both the
children spared and lost. The
mission of the Quilt is to create a visual testimony of the most compelling
symbol of newborn screening - the children touched by it.
The Quilt will be unveiled on September 1, 2001 in celebration of NBS
Awareness Month next year.
To find out how to participate in the project or to learn more about the project, please visit our website at www.tylerforlife.com under the 'NBS Unity Quilt' icon.
This
publication is presented by:
Tyler
For Life Foundation, Inc.
6340 Holborne Lane
Douglasville, GA 30134
Email: comments@tylerforlife.com
Phone: (770) 947-3638
Toll Free: (888) 454-3383
Fax: (770) 947-8507
www.tylerforlife.com
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