January 2001 Online Newsletter Welcome to the January 2001 edition of the Tyler For Life Foundation's online newsletter.
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SOMETHING TO THINK ABOUT Did you know that most state newborn screening laboratories are closed on weekends and holidays? It is true. And this means that newborn screening (NBS) tests accumulate during these periods causing delays in receiving affected children. Every second counts in the life of a child affected by a NBS disorder, and needless delays such as these must be stopped. In an effort to expedite NBS results, some states are considering expanding the hours the laboratory is open.
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FEATURED DISORDER OF THE MONTH The January 2001 featured disorder of the month is biotinidase deficiency. William Farmer was born in Georgia where biotinidase deficiency was not included in the state mandated NBS panel. William, who appeared to be a normal, healthy child, began to slowly lose the ability to walk or even sit up. William had to undergo months of doctor's visits and hospitalizations before anyone figured out what was wrong with him. William had biotinidase deficiency. William is expected to make a full recovery with consistent physical therapy and continual treatment of his biotinidase deficiency - a daily dose of Vitamin Biotin. William's mother, Laurie, has advocated strongly to have biotinidase deficiency mandated in all state NBS panels. The March of Dimes included this disease as one of the 8 disorders they recommend as being the minimum screened for in every state.
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DISCUSSION LIST SERVE SPONSOR A very special thank you goes to BioRad Laboratories, who graciously made a contribution to sponsor our Newborn Screening Discussion List Serve. Their generosity is what will allow the list serve to continue advertisement free. Again, many thanks to BioRad and to all who have made contributions, allowing us to continue to our efforts in newborn screening.
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PLEASE WRITE This month we ask you to contact: Montel Williams Show 433 West 53rd Street New York, NY 10019 Email: v_services@montelshow.com Please share your personal story and pictures. Together we can show we're not so rare, and convince someone to raise awareness by doing an interesting story on newborn screening, the related disorders, and the fact that children are suffering serious harm and even death because no one told their parents to spend $25 on a test, and to do the test timely. Professionals are encouraged to join this effort by sharing their expertise and any interesting stories they have to offer.
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IN THE NEWS News 4 Jax; December 20, 2000 Inexpensive Test Could Save Babies' Lives - Screening Looks For Metabolic Disorders http://www.news4jax.com/jax/healthbeat/stories/healthbeat-20001220-104907.html Clarion Ledger; December 26, 2000 (Mississippi) Tupelo Family Gives Gift of Wisdom http://www.clarionledger.com/news/0012/26/26ben.html
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MAILING LIST The first ever TFL snail mail newsletter will be going out next week. This is your last chance to be included in this mailing. If you haven't already, please join the mailing list by filling out the online form at http://www.tylerforlife.com/join%20the%20tfl%20mailing%20list.htm .
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TFL FAMILY CONNECTIONS MESSAGE BOARD A message board where families or individuals with the same disorder can communicate and share information with one another is available on 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.
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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 at http://www.tylerforlife.com/awareness%20pins%20campaign.htm .
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NBS UNITY QUILT The Tyler For Life Foundation is 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. All quilt panels need to be sent by June 1, 2001. To find out how to participate in the project or to learn more about the project, please visit our website at http://www.tylerforlife.com/NBS%20Unity%20Quilt.htm under the 'NBS Unity Quilt' icon. You can also contact the project manager by email at unityquilt@tylerforlife.com.
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ADVOCACY PACKAGES An advocacy package containing helpful materials for advocating for newborn screening, including recent press articles, a complete list of NBS related articles, information from NeoGen & Baylor, a "How To Advocate" guide sheet, personal stories of families affected by newborn screening, and much more, is available.
To order a package, send your name, mailing address, and phone number to adpacks@tylerforlife.com . A suggested donation of $5 is requested for each package to help cover costs of producing and mailing the packages. All checks should be made payable to the Tyler For Life Foundation and can be sent to Tyler For Life Foundation, 6340 Holborne Lane, Douglasville, GA 30134-4023.
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UPCOMING EVENTS February 15-20 American Association for the Advancement of Science Annual Meeting and Science Innovation Exposition Phone: (202) 326-6450 Web: www.aaas.org Hilton San Francisco & Towers San Francisco, CA Hotel: (800) 445-8667 March 1-4 American College of Medical Genetics Annual Clinical Genetics Meeting Phone: 856.423.7222, ext. 235 Web: www.faseb.org/genetics/acmg Hyatt Regency Miami Miami. FL Hotel: (800) 233-1234 May 4 & 5 National Coalition for PKU & Allied Disorders 1st Biennial NCPAD Conference Phone: (877) 996-2723 Web: www.pku-allieddisorders.org Embassy Suites Dublin, OH May 6-9 Association of Public Health Laboratories Newborn Screening and Genetic Testing Symposium Phone: (202) 822-5227 x220 Web: www.aphl.org Hilton North Raleigh Raleigh, NC Hotel: (919) 872-2323 June 22 & 23 Parents of Galactosemic Children National Galactosemia Conference Email: mesameadow@aol.com Web: www.galactosemia.org Atlanta Airport Marriott Atlanta, GA Hotel: (404) 766-7900 June 29-July 1 Organic Acidemia Association & National Urea Cycle Disorder Foundation Joint Metabolic Conference Phone: (800) 38NUCDF Web: www.oaanews.org Marriott - Medical Center Houston, TX Hotel: (713) 796-0080
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TFL WEBSITE IS NOW MORE USER FRIENDLY TFL is excited to announce that now our website can be translated into more than 8 other languages including French, Spanish, German, Italian, Portuguese, Japanese, Korean, and Chinese. From the top of the homepage at www.tylerforlife.com and click on "Click here to translate this website into another language" to test this new feature.
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This publication is presented by: Tyler For Life Foundation, Inc. 6340 Holborne Lane Douglasville, GA 30134 Email: info@tylerforlife.com Phone: (888) 454-3383 Local: (770) 947-3638 Fax: (770) 947-8507 Dedicated to Raising the Awareness of Newborn Screening and Related Disorders For more information about our efforts, please visit 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
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