February 2001 Online Newsletter Welcome to the February 2001 edition of the Tyler For Life Foundation's online newsletter. ********************************************************************** SOMETHING TO THINK ABOUT Did you know that the proper abbreviation for tandem mass spectrometry newborn screening is MS/MS? Many people incorrectly refer to tandem mass spectrometry screening as TMS, however TMS is an abbreviation for something completely different. MS/MS is the correct abbreviation for tandem mass spectrometry newborn screening. ********************************************************************** FEATURED DISORDER OF THE MONTH The parents of Jonathon Spencer Oliphint noticed delays in his development when he was 4 months old, and continued to notice them, as he grew older. Doctors repeatedly told his parents not to be concerned. At 3 years old, Jonathon began to stare off in space and be oblivious to the world for periods of time. After many medical tests were run, Jonathon was found to have a urea cycle disorder called Argininosuccinic Aciduria (ASA). ASA is treated with a low-protein diet. Jonathon is the February 2001 featured story. You can view the full story here. ********************************************************************** CONTACT MEDIA This month we ask you to contact: Jenny Jones PO Box 3333 Chicago, IL 60654 Phone: (312) 836-9456 Fax: (312) 836-9473 Please share the story of your family member together with all of us, to help us get the attention of a national media show. Professionals are encouraged to share interesting experiences. National TV Show suggestions are welcomed, along with contact information. ********************************************************************** VOLUNTEERING If you are concerned that every day in this country 5 babies suffer brain damage or death due to inadequate newborn screening, please consider volunteering to advance the work of Tyler for Life Foundation. Needed, especially, are volunteers for the following positions: Genetic Counselor Contact Person Offer newborn screening info and materials. Contact data will be provided. Hospital Advocates Speak with head nurse/head of pediatrics in local hospitals to urge comprehensive newborn screening. "How to" will be provided. Independent Educators Read local birth announcements. Send new parents articles on comprehensive newborn screening. Link to article or copy of article will be provided. Please check our webpages http://members.tripod.com/~tyler4life/index.phpl for other volunteer job descriptions and/or contact Janine Clay volunteer@tylerforlife.com for additional information. Thank you! ********************************************************************** EVENTS THIS MONTH 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 TFL President, Tera Mize, is scheduled to speak at the AAAS Exposition on Saturday, February 17. ********************************************************************** 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. ********************************************************************** NBS UNITY QUILT 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. The quilt project is a united effort between all the disorders detectable through newborn screening. To find out how to participate in the project or to learn more about the project, please contact the project manager at unityquilt@tylerforlife.com and/or visit http://www.tylerforlife.com/NBS%20Unity%20Quilt.htm ********************************************************************** 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. To order a package, send your name, mailing address, and phone number to adpack@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. ********************************************************************** HANDOUT AMERICA CAMPAIGN The Handout America campaign has distributed over 40,000 newborn screening pamphlets. The pamphlets, entitled "A Parent's Guide to Newborn Screening: It's Not Just PKU Anymore", have been distributed all across the United States. The pamphlets are supplied at no cost to volunteers willing to hand them out. They are also supplied to doctor's offices and hospitals willing to distribute them to their patients. The Handout America campaign will be a continuous campaign for TFL. We hope that it will continue to grow and are working to secure a sponsor for the project. The pamphlets can be ordered from our website at http://www.tylerforlife.com/order%20handouts.php , or by calling TFL at (888) 454-3383. You can also download from the website a copy of the handout and/or an order form to mail or fax in. Many thanks to Kileen Hall, VLCAD mom of Albuquerque, New Mexico, for heading the Handout America project ********************************************************************** 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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