September 2001
Online Newsletter
Welcome to the September 2001 edition of the Tyler For Life Foundation's
Online Newsletter.
****************************************************************************
SOMETHING TO THINK ABOUT
Did you know that 9 states are already using tandem mass spectrometry in
their newborn screening program . . . only 4 of 9 only use this equipment to
screen for 1 disorder (although its capable of screening over 25) . . . that 14
states are formally discussing implementing MS/MS . . . that 16 states have
significant measures in place to implement MS/MS screening . . . that 2 states
have already mandated the screening but have not physically started screening
with it to date? There are 13 states that have reported to us that they are not
even considering expanding their NBS panels to include MS/MS disorders. Find out
exactly what your state screens for at http://tylerforlife.com/what_does_your_state_screen_for.htm
.
****************************************************************************
SEPTEMBER IS NEWBORN SCREENING AWARENESS MONTH
September is newborn screening awareness month. Last September, many
advocates were successful in spreading awareness of newborn screening through
media attention. These articles and TV newscasts have helped parents and
professionals take a closer look at the problems of newborn screening, lack of
it, and perception of it. This year, a challenge has been issued to advocates to
once again gain media attention - not limited to the expansion of NBS but also
to the timing of NBS and the related disorders themselves.
NBS is not just screening; it is also reporting positive test results quickly, and obtaining proper follow-up care in a timely manner. When 9-day-old Tyler died unnecessarily in 1998 from undiagnosed galactosemia, his NBS test results arrived a few days after his death - obviously not soon enough. Tyler's parents were told that Tyler's preventable and unnecessary death was so rare - something that "never happens" and has "never happened before." Yet Tyler's tragic story did happen again - not once, but twice, to two different American galactosemia families, in a recent 6-month period. That is, twice that we know of. How many more are there that we don't know about? How many more will continue to happen due to lack of awareness?
Please call the press today and share your story. For more help, please contact Wendy Nawn, telephone (610) 251-9876, cell phone (610) 420-2058, email wendy@tylerforlife.com .
***************************************************************************
AWARENESS PINS
Newborn screening awareness lapel pins are available again this year.
Everyone is asked to wear the pins every day in September to show your support
of Newborn Screening Awareness Month. Pins are available for a suggested
donation of $3 each. Please mail your completed order form along with payment to
receive pins. (We are not able to provide pins in advance of payment.) The order
pin form can be printed out at http://tylerforlife.com/Download%20Documents/Order%20Form%20-%20Pins.pdf
The awareness pin campaign was first introduced last year and was a great success with more than 26,000 pins distributed. Last year's pin campaign was a collaborative effort among the Tyler For Life Foundation and several of our sister organizations. In addition to wearing the pins every day in September, many newborn screening advocates wear their awareness pins every day of the year.
***************************************************************************
DONATE THROUGH THE UNITED WAY
With fall just around the corner, so is the annual United Way fundraising
drive. The United Way begins its annual fundraising drive in the Fall of each
year. The United Way provides a way for many charities to obtain funds by
individuals contributing a small portion of their paycheck through payroll
deduction. Each United Way chapter lists a variety of local organizations that
may be chosen for payroll deductions, and since the Tyler For Life Foundation is
a national organization, our name is not usually provided on this list of
charities. However, the majority of United Way chapters also allow individuals
to write in the charity of their choice.
Our 501(c)(3) non-profit status qualifies us for this write-in option and provides us with much needed funds for our advocacy, education and research projects. You can initiate a write-in campaign in your workplace by contacting your company's United Way chairperson to ask if there is a write-in option and if so, the possibility of informing the rest of the employees about the Tyler For Life Foundation. Most co-workers are eager to donate to a cause that is personally tied to a colleague.
You should reach out to other employees to let them know of the United Way write-in campaign and about the Tyler For Life Foundation. You may to post a letter or flyer on the office bulletin board or place a poster in the lunch area that asks your fellow employees to join you in the write-in campaign to benefit the Tyler For Life Foundation. A flyer has been put together for this purpose and will be available next week on the TFL website at www.tylerforlife.org under "Online Documents".
If your company United Way chairperson has any questions, please call us. The United Way campaigns have been a successful source of revenue for many other organizations and groups, and with your help we hope it will be just as successful for TFL.
***************************************************************************
MISSOURI TO EXPAND SCREENING
Missouri legislation was recently passed to mandate testing for Congenital
Adrenal Hyperplasia (CAH), Cystic Fibrosis (CF), Biotinidase Deficiency, and
disorders detectable through tandem mass spectrometry (MS/MS). This bill was
signed by the Missouri Governor on June 13, 2001. The new law requires the
Department of Health to expand the newborn screening requirements by January 1,
2002.
***************************************************************************
NBS T-SHIRTS AVAILABLE
Show your NBS spirit by wearing NBS apparel!! Newborn screening t-shirts are
available just in time for Newborn Screening Awareness Month. The adult t-shirts
bear the slogan "If You Love Babies Stick Here" on the front and
"Newborn Screening: Saving Babies One Foot At A Time" on the back. The
t-shirts are white and are 100% preshrunk cotton. T-shirts are available in
Adult Sizes Small, Medium, Large, 1X-Large, 2x-Large and 3X-Large. There are
limited quantities of the 2X-Large and 3X-Large sizes. Some children's t-shirts
are also available in a different design. The children's shirts bear a slogan of
"NBS" on the front and "Newborn Screening: Saving Babies One Foot
At A Time" on the back.
The children's shirts are ash gray and made up of a 50% cotton and 50% polyester blend. Available youth's sizes are sizes 10/12 (youth medium) 14/16 (youth large). There are limited quantities of the children's sizes.
In addition, there is a small quantity of NBS golf shirts available. All golf shirts bear an embroidered chest logo of "NBS" with "Tyler For Life Foundation" written smaller under it. Golf shirts are available in sizes Adult medium (quantity: 1 /color: ash gray), Adult Large (quantity: 2 /color: teal green), Adult 1X-large (quantity: 1 / color: teal green), Adult 2X-Large (quantity: 3 /color: teal green).
All t-shirts are available for a suggested donation of $10 each. The suggested donation for golf shirts is $15 each. A shipping & handling charge of $5 is charged with each order to help cover the costs of shipping.
The order from can be printed out from http://tylerforlife.com/Download%20Documents/Order%20Form%20-%20Apparell.PDF . Please include your completed order form and payment along with each order. (We are not able to provide t-shirts in advance of payment.)
***************************************************************************
YOUR TAX REBATE CAN HELP SAVE LIVES
Beginning in August many of us will be seeing extra money in our mailboxes
thanks to the tax relief law signed earlier this year by President Bush.
Why not donate your refund, or at least a portion of it, to the Tyler for Life
Foundation and help save babies?
By donating your rebate check to TFL, you will be funding awareness projects, such as the printing of newborn screening pamphlets and supporting of this website which has become a clearinghouse of information for parents, medical professionals, and others seeking knowledge of newborn screening and the issues surrounding it. The Tyler For Life Foundation needs to raise $150,000 to be able to fund its expected budget for next year. We can not do this without your help. Please donate a portion of your tax rebate check to help us continue "saving babies one foot at a time".
***************************************************************************
PUBLIC SERVICE ANNOUNCEMENTS
Several public service announcements have been put together to help reach the
lay public during Newborn Screening Awareness month. Volunteers are requested to
submit these PSAs to your local radio stations, television stations, website
sites, etc. Please contact Wendy Nawn at wendy@tylerforlife.com
for more information on how to get these out to your local media outlets.
PSA #1
Contact: Wendy Nawn, Vice-President/Public Affairs, (610) 251-9876 (station
staff only)
Reading time: 30 seconds
Did you know your baby has a 1 in 2,000 chance of dying or becoming brain
damaged from an undetected metabolic disorder? For information about
Comprehensive Newborn Screening contact Tyler for Life Foundation at
1-888-4LIFE-83 or www.tylerforlife.org to learn about the screening that may
save your baby's life.
PSA #2
Contact: Wendy Nawn, Vice-President/Public Affairs, (610) 251-9876 (station
staff only)
September is newborn screening awareness month. To celebrate the individuals
affected by disorders detectable through newborn screening, Tyler for Life
Foundation has created a NBS Unity Quilt. To find out how to support or
participate in this project, or where you may view the NBS Unity Quilt, contact
TFL at 1-888-4LIFE-83.
***************************************************************************
HANDOUT AMERICA CAMPAIGN SUSPENDED
The Handout America project has been temporarily suspended due to lack of
funding to continue the project. This project has distributed more than 60,000
of the newborn screening pamphlets entitled 'A Parent's Guide to Newborn
Screening'. Although there was no charge for the handouts, donations were
requested to help the project continue. Sadly, only $559.00 has been collected
to help pay for printing and mailing, yet almost $20,000 has been spent on these
costs.
We are actively seeking a corporate sponsor for this project. We are also seeking some grassroots fundraising by volunteers to help reinstate this project. If you are interested in helping by holding a fundraising event or think your employer may be interested in making a contribution towards this project, please contact Marcia Dunahoo, toll free (888)4-LIFE-83 (local 903-887-0259) or by email at marcia@tylerforlife.com .
Although the hard copy of this handout is not currently available, this handout is available for immediate use by downloading it from our website at www.tylerforlife.org . It is located on the Online Documents page.
**************************************************************************
NEW ONLINE NEWSLETTER EDITOR
The Tyler For Life Foundation is excited to announce that a new volunteer has
come aboard to be the editor of the online newsletter. We would like to extend a
very special welcome and thank you to Apryl Thomas for her willingness to take
over this project. She will begin this task with the October, 2001, edition of
the newsletter. Apryl is a writing student at the University of Georgia and
found our organization through an online volunteer matching service called 'VolunteerMatch'.
Thanks again to Apryl and to all the TFL volunteers that work to keep this
organization running.
We are still currently looking for several more volunteers to help with a number of tasks for TFL. If you are interested in volunteering your time, please contact our Volunteer Coordinator, Janine Clay, at volunteer@tylerforlife.com .
**************************************************************************
NEW LIST SERVES
In August, the list serve service used by TFL and several of our
"sister" organizations discontinued offering its services. Please note
the new information for these list serves and update your address books as
necessary:
Newborn Screening Discussion List Serve
You can subscribe to this list serve at http://www.geneticalliance.org/mailman/listinfo/nbsdiscussion
. After subscribing, messages should be sent to nbsdiscussion@geneticalliance.org
. This List Serve is hosted by the Tyler For Life Foundation - www.tylerforlife.org
Fatty-acid Oxidation Disorders List Serve
You can subscribe to this list serve by sending a blank email to FODSupport.org-subscribe@topica.com
. After subscribing, messages should be sent to FODSupport.org@topica.com
. This List Serve is hosted by the FOD Family Support Group - www.fodsupport.org
.
Homocystinuria List Serve
You can subscribe to this list serve by sending a blank email to HCUFamilies-subscribe@topica.com
. After subscribing, messages should be sent to HCUFamilies@topica.com
. This List Serve is hosted by the National Coalition for PKU & Allied
Disorders - http://www.pku-allieddisorders.org
Organic Acid Disorders List Serve
You can subscribe to this list serve by sending a blank email to OAANEWS-subscribe@topica.com
. After subscribing, messages should be sent to OAANEWS@topica.com
. This List Serve is hosted by the Organic Acidemia Association - www.oaanews.org
Mild PKU List Serve
You can subscribe to this list serve by sending a blank email to MildPKU-subscribe@topica.com
. After subscribing, messages should be sent to MildPKU@topica.com
. This List Serve is hosted by the National Coalition for PKU & Allied
Disorders - http://www.pku-allieddisorders.org
Teens & Adults Only PKU List Serve
You can subscribe to this list serve by sending a blank email to pkuteensandadultsgroup-subscribe@topica.com
. After subscribing, messages should be sent to MildPKU@topica.com
. This List Serve is hosted by the National Coalition for PKU & Allied
Disorders - http://www.pku-allieddisorders.org
Tyrosinemia List Serve
You can subscribe to this list serve by sending a blank email to TyrosinemiaFamilies-subscribe@topica.com
. After subscribing, messages should be sent to TyrosinemiaFamilies@topica.com
. This List Serve is hosted by the National Coalition for PKU & Allied
Disorders - http://www.pku-allieddisorders.org
**************************************************************************
EVENTS THIS MONTH
September 4
NBS Unity Quilt Unveiling Ceremony
More Information Toll Free: (866) 710-8202
Web: NBS Unity Quilt
Virtua West Jersey Hospital
Voorhees, New Jersey
September 10-11
"Enhancing the Implementation of Tandem Mass Spectrometry for Newborn
Screening Laboratories: A Working Group Meeting"
Centers for Disease Control and Prevention
There is no registration fee for this meeting.
Contact Person: L. Omar Henderson, Ph.D. - Meeting Coordinator
Email: ohenderson@cdc.gov
Phone: (770) 488-7972|
Fax: (770) 488-4255
Marriott Madison West Atrium Hotel and Conference Center
Madison, Wisconsin, USA
September 28-30
WCD Conference (World Congress & Exposition on Disabilities)
EP Foundation for Education, Inc.
More info on the web: www.wcdexpo.com
Georgia International Convention Center
College Park, Georgia
**************************************************************************
ABOUT THIS LIST SERVE
You are receiving this email because your email address is subscribed as a
member of the Newborn Screening Announcement List Serve hosted by the Tyler For
Life Foundation - A Parents Resource on Newborn Screening.
Messages can not be posted to this list serve as it is used for announcement purposes only. Please do not respond to this message. General information about this list serve, including if you want to unsubscribe or change your options (eg, switch to or from digest mode, change your password, etc.), is at http://www.geneticalliance.org/mailman/listinfo/nbsannouncements
If you have additional questions or comments about the list serve, the List Master can be contacted at teri@tylerforlife.com .
**************************************************************************
Online Newsletter Editor: Apryl Thomas
This is a publication of:
Tyler For Life Foundation, Inc.
5335 N. Helton Road
Winston, GA 30187
Toll Free: (888) 454-3383
Fax: (770) 947-8507
Email: info@tylerforlife.com
http://www.tylerforlife.com
NEWBORN SCREENING: Saving Babies One Foot At A Time
This publication is sponsored by:
BioRad Laboratories
1000 Alfred Nobel Drive
Hercules, CA 94547
Phone: (510) 724-7000
Fax: (510) 741-5817
http://www.bio-rad.com
Donate Now at http://www.guidestar.org/helping/donate.adp?ein=58-2509450 . The Tyler For Life Foundation imagines a day when all babies are comprehensively screened as newborns and are given a chance at life. Your tax-deductible donation of any size helps fund lifesaving, life-improving testing that means hope for the more than 1 in 1,500 babies who are born with a disorder detectable through newborn screening - disorders, when not treated immediately, can lead to serious morbidity, or even mortality. With your help, we can give all babies a chance at life, one foot at a time.
HOME | ABOUT US | PRESS RELEASES | DONATE NOW | VOLUNTEER NOW
Contact
Save Babies Through Screening
for questions about the content of this site or
the Webmaster
for questions about technical issues related to this site.
Terms of use
for this site.