© 2008 Save Babies Through Screening Foundation. All rights reserved.
The Save Babies Through Screening Foundation is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).
Our mission is to improve the lives of children by working to prevent death and disabilities resulting from disorders detectable through newborn screening tests.
The Save Babies Through Screening Foundation is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).
Our mission is to improve the lives of children by working to prevent death and disabilities resulting from disorders detectable through newborn screening tests.
Save Babies Through Screening Foundation, Inc.
P. O. Box 42197 • Cincinnati, Oh 45242
Toll Free: 1-888-454-3383
P. O. Box 42197 • Cincinnati, Oh 45242
Toll Free: 1-888-454-3383
Exhibits and Presentations
Educating Expentant Families at the New Arrivals Baby Fair
NBS advocate, Laura Clow, reserved a booth under the name of Tyler For Life Foundation, Inc., the former name of Save Babies Through Screening. She manned the booth with Robert Grier Ph.D. from the Kimberly H. Courtwright and Joseph W. Summers Institute of Metabolic Disease at Baylor University Medical Center in Dallas. Dr. Grier is one of the doctors who run the Supplemental Newborn Screening Laboratory at the institute.
Over 500 newborn screening brochures were printed and handed out at the fair. Dr. Grier also brought supplemental screening brochures from Baylor. He also donated ten newborn screening tests which were given away in a drawing.
The response to the display was positive. Approximately 300 people visited the booth and the majority of booth visitors were expecting new babies. The women who were very close to delivery were given a Baylor Screening Packet to take with them that day.
"It was very rewarding to spread the news of Expanded Newborn Screening to so many people in one day," said Laura Clow, whose son had Maple Syrup Urine Disease. "People were very interested to hear about the option of this test."
Laura reported that one of the winners the drawing for the free supplemental screening test was especially ecstatic to have won. She had a 15-week-old baby who had tested false positive for Galactosemia on the State required test. They had to re-run the state test. Because of concern, she wanted to have the Expanded Screening performed, but did not know where to have it done. She was very thankful and stated that expanded screening will give her peace of mind.
The $350 cost of the booth was discounted to $275 when Laura explained the purpose of Save Babies Through Screening and that it was a non-profit volunteer organization. Furthermore, Laura and her husband contributed $50 towards the cost of the booth.
A special thank you to Laura Clow and Dr. Bob Grier for donating their time to put the display together and serve as greeters to everyone that visited the booth.
Over 500 newborn screening brochures were printed and handed out at the fair. Dr. Grier also brought supplemental screening brochures from Baylor. He also donated ten newborn screening tests which were given away in a drawing.
The response to the display was positive. Approximately 300 people visited the booth and the majority of booth visitors were expecting new babies. The women who were very close to delivery were given a Baylor Screening Packet to take with them that day.
"It was very rewarding to spread the news of Expanded Newborn Screening to so many people in one day," said Laura Clow, whose son had Maple Syrup Urine Disease. "People were very interested to hear about the option of this test."
Laura reported that one of the winners the drawing for the free supplemental screening test was especially ecstatic to have won. She had a 15-week-old baby who had tested false positive for Galactosemia on the State required test. They had to re-run the state test. Because of concern, she wanted to have the Expanded Screening performed, but did not know where to have it done. She was very thankful and stated that expanded screening will give her peace of mind.
The $350 cost of the booth was discounted to $275 when Laura explained the purpose of Save Babies Through Screening and that it was a non-profit volunteer organization. Furthermore, Laura and her husband contributed $50 towards the cost of the booth.
A special thank you to Laura Clow and Dr. Bob Grier for donating their time to put the display together and serve as greeters to everyone that visited the booth.
Screening Education Provided At Conference on Disabilites in Atlanta
The annual World Congress & Exposition on Disabilities (WCD) is an annual international conference and trade event. The WCD is intended to educate, inform and provide a useful exchange of ideas for persons with disabilities and special healthcare needs and those involved in their care and development. Pediatricians, parents, special education teachers, advocates and many more attended the educational workshops and visited the more than one hundred displays in the exhibit hall.
Marcia Dunahoo and Tera Mize from Save Babies Through Screening were available at the display to greet conference attendees and to answer questions about newborn screening and related disorders. Newsletters, fact sheets, and educational brochures were available from all the participating organizations at the booth. Supplemental newborn screening kits were provided by Baylor Medical Center for the display and were distributed to interested persons. In all over 250 supplemental newborn screening kits were handed out. The display sparked many discussions about newborn screening and the disorders detectable through it.
Educational workshops were held the entire weekend. Several workshops were held on newborn screening related disorders including sessions on genetic disorders, genetic counseling, metabolic disorders, mitochondrial disorders and sickle cell disease.
The World Congress & Exposition on Disabilities is held every year. You can find out more about the WCD by visiting their website at www.wcdexpo.com or by calling toll free 1-877-923-3976.
Marcia Dunahoo and Tera Mize from Save Babies Through Screening were available at the display to greet conference attendees and to answer questions about newborn screening and related disorders. Newsletters, fact sheets, and educational brochures were available from all the participating organizations at the booth. Supplemental newborn screening kits were provided by Baylor Medical Center for the display and were distributed to interested persons. In all over 250 supplemental newborn screening kits were handed out. The display sparked many discussions about newborn screening and the disorders detectable through it.
Educational workshops were held the entire weekend. Several workshops were held on newborn screening related disorders including sessions on genetic disorders, genetic counseling, metabolic disorders, mitochondrial disorders and sickle cell disease.
The World Congress & Exposition on Disabilities is held every year. You can find out more about the WCD by visiting their website at www.wcdexpo.com or by calling toll free 1-877-923-3976.
NBS Unity Quilt makes trip to Washington DC
The Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCAD) quilt panel honoring, Ben Haygood, was on display during the National Society of Genetic Counselor’s 20th Annual Education Conference held in Washington, DC. Nearly 1,000 genetic counselors were in attendance to learn about recent developments in medical genetics, anticipated advances in comprehensive genetic testing, and new complexities in counseling issues.
The quilt and Ben’s story made a lasting impression and were an ideal prelude to the short course about the counseling and management of metabolic disorders which followed the regular program. The purpose of the short course was to provide a comprehensive review of a variety of inborn errors of metabolism. Emphasis was placed on understanding the status of current biochemical and molecular testing options, treatment and medical management, and counseling strategies aimed at assisting families in coping with the medical implications and psychological impact of metabolic disease.
Genetic Counselors left the conference equipped with the scientific knowledge and personal perspective needed to integrate this new information into their clinical practice.
The quilt and Ben’s story made a lasting impression and were an ideal prelude to the short course about the counseling and management of metabolic disorders which followed the regular program. The purpose of the short course was to provide a comprehensive review of a variety of inborn errors of metabolism. Emphasis was placed on understanding the status of current biochemical and molecular testing options, treatment and medical management, and counseling strategies aimed at assisting families in coping with the medical implications and psychological impact of metabolic disease.
Genetic Counselors left the conference equipped with the scientific knowledge and personal perspective needed to integrate this new information into their clinical practice.
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