February 2002 Online Newsletter
WELCOME to Save Babies Through Screening's February 2002 Online Newsletter!
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SOMETHING TO THINK ABOUT:
Did you know that the state of Wisconsin estimated that it saves more than $500,000 annually by adding 14 additional disorders to its screening panel?
Wisconsin reported that cost to add the new disorders was approximately $400,000, yet when these disorders were let untreated, they cost more than $900,000 annually, thus saving more than $500,000!!! Many states cite that astronomical costs to add additional screenings is why they are so slow to move forward with the additions. But as the Wisconsin data shows, additional screening actually saves money.
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UPCOMING EVENTS:
February 13-14, 2002
National Institute of Health (NIH) - Secretary's Advisory Committee on Genetic
Testing (SACGT) Meeting
Web: http://www4.od.nih.gov/oba/sacgt/sacgtmtg.htm
Bethesda, MD
February 14-19, 2002
American Association for the Advancement of Science (AAAS) - Annual Meeting and
Science Innovation Exposition
Phone: 202-842-1065
Web: www.aaasmeeting.org
Boston, Massachusetts
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STATE SPOTLIGHT: CALIFORNIA EXPANDS NEWBORN SCREENING
A new state law in California expands newborn screening (NBS) for a number of serious disorders. It is being called the California MS/MS Evaluation Project. The implementation of this technology will expand testing to screen for more than 25 additional disorders. Previously, California only screened for four disorders in its newborn screening test.
The new expanded testing is done in addition to the routine screening mandated by California state law and is done using the same blood spot specimen. Parents of babies born in California will be offered the option of having the expanded testing. There is no additional cost to receive the new expanded testing.
To ensure that their baby can receive this additional testing, California families who are expecting children should contact their intended birthing facility to find out if it is enrolled in the new program. Only birthing facilities that have enrolled in the new program will be offering the added testing.
Save Babies Through Screening recommends that families obtain supplemental screening for Biotinidase deficiency and congenital adrenal hyperplasia which are still not currently screened for in California even with the new expansion. Contact: Neo Gen Screening (1-866-463-6436).
Save Babies Through Screening (Tyler For Life Foundation) was among those who wrote letters of support for the California expansion project, helping the program to obtain the grants that funded the new program.
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VOLUNTEER NEEDS:
Save Babies Through Screening is grateful for the support shown by its volunteers. Whether you quietly work on newborn screening projects or vocally participate as "newborn screamers", please know we value your efforts to save the lives of babies!
If you have been considering how you might help, please note the following opportunities:
* Assistant Librarian to help with the collection and editing of testimonies
* Database Builder to research/enter data on overnight couriers for NBS specimens
* Neighborhood Fundraisers to support the work of the foundation
AND this highly specialized volunteer job: an independent, licensed, insured CPA to conduct a pro bono annual audit of the foundation's books...which are in excellent condition (we boast shamelessly).
Interested? Contact janine@savebabies.org for info on these and other offerings.
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GRASS ROOTS FUNDRAISING:
Please consider volunteering to host a fundraising event in our ongoing fundraising campaign. There are many event ideas you can consider. To host or sponsor a fundraising event, please contact us at fundraising@savebabies.org . Here are a few ideas for fundraising events:
*Walkathons *Bike Rides *Family Fun Days
*Dinners *Wine Tasting *Treasure Hunts
*Potlucks *Picnics *Luncheons *Cooking Classes
*Bowl-a-thons *Casino Nights
*Auctions *Hop-a-Thons *Bake Sales
*Karaoke Nights *Variety Shows *Dance Marathons
*Sports Tournaments *Garage Sales *Car Washes
*Tupperware Parties *Pampered Chef Parties *Picnics
*Dances *Treasure Hunts *Raffles
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THOSE WHO ARE NOT FORGOTTEN:
Those Who Are Not Forgotten is a memorial column in the Save Babies Through Screening hardcopy newsletter. It represents those lost to lack of screening, or mishandled tests. If you have already submitted information we still have it on file, and may use it again in future issues that in the birth month of your loved one We would like this list to change in each edition, so please consider contributing to this column.
If you, or someone you know would like to have their loved one listed in this column, please email the following information to teri@savebabies.org
Name
Date of Birth - Date of Death
Disorder
City & State
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YOUR TAX REBATES CAN HELP SAVE LIVES:
As tax season rolls around again, many of us will be seeing extra money in our mailboxes from tax refunds. Why not donate your refund, or at least a portion of it, and help Save Babies Through Screening? By donating your refund check to SBTS, 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. Please donate a portion of your tax rebate check to help us continue to "save babies one foot at a time".
Send your check or money order payable to:
Save Babies Through Screening
5335 N. Helton Road
Winston, GA 30187
You may also donate online by Visa or MasterCard at http://www.guidestar.org/helping/donate.adp?ein=58-2509450
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This is a publication of :
Save Babies Through Screening
(formerly the Tyler For Life Foundation)
5335 N. Helton Road
Winston, GA 30187
Toll Free: (888) 454-3383
Fax: (770) 947-8507
Email: email@savebabies.org
www.savebabies.org
Newborn Screening Saves Babies One Foot At A Time
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