April 2000 Online Newsletter
Welcome to the latest edition of the Tyler For Life Foundation's online newsletter. SOMETHING TO THINK ABOUT: Did you know that most states use regular U.S. Mail to deliver your baby's newborn screening test from the collection site (i.e. hospital, doctor's office, health department) to the laboratory for analyst. Yes, the test that could very well mean the difference between your baby suffering mental retardation or even death, is simply put in the mailbox alongside your electric bills, your magazine subscriptions or even your letter to dear Aunt Bee. The US Mail is used primarily because of "cost efficiency" which we all know seems to be the biggest priority when it comes government programs. Not only does using regular mail to send your precious little one's specimen to the lab cause needless delays in the test arriving at the lab (hence the old saying "the check's in the mail"; you know, the one that never arrives), it also sustains the tests to the heat and humidity of the uncontrolled climate of the mail trucks and mail facilities for an indefinite length of time. Isn't it time newborn screening tests were treated like any other critical blood test? Don't let another baby suffer needlessly: Demand that the newborn screening tests in your state be overnighted to the laboratory daily. WRITING ROSIE Many thanks to all those who participated in writing to the Rosie O'Donnell show on St. Patrick's Day. No word yet from the show's producers, but the turnout was FANTASTIC and we expect to hear something in the near future. IN THE NEWS An article for Parenting Magazine about newborn screening is currently underway. The article is expected to be included in the August 2000 issue. We'll keep you updated! Recently several articles about CNBS have been presented. Here are some of the latest: http://www.southbendtribune.com/stories/2000/03/21/living.20000321-sbt-MICH- http://www.phillynews.com/inquirer/2000/Mar/25/city/TEST25.htm
http://www.abqjournal.com/health/2health04-03-00.htm
http://www.abqjournal.com/health/3health04-03-00.htm For a full list of press attention, please visit the website at www.tylerforlife.com Be sure to read them all! WHAT IS TANDEM MASS SPECTROMETRY (MS/MS)? The Tyler For Life Foundation is excited to announce the addition of a new article which describes MS/MS. The article, A Lay Person's Guide to Tandem Mass Spectrometry and Newborn Screening, is provided by one of the primary investigators that developed the newborn screening application of tandem mass spectrometry, Dr. Donald H. Chace, Ph.D., M.S.F.S. Visit www.tylerforlife.com to read the complete article. DISORDER OF THE MONTH: Each month this newsletter and the Tyler For Life website will "feature" a disorder and a family dealing with the condition. This month's feature is : Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCAD) MCAD is a rare hereditary disease that is caused by the lack of an enzyme required to convert fat to energy. Persons with MCAD can not properly use stored fat for energy and thus must never go for extended periods without consumption of food. The period between meals can be just a few hours as a newborn. Persons with MCAD can die suddenly for no "apparent" reason because MCAD is a silent disorder and presents no signs or symptoms until a person is in crisis. Read about MCAD and the story of Alexander Nawn at www.tylerforlife.com Alex was born with MCAD and his life was spared because of early diagnosis of his condition through comprehensive newborn screening (CNBS). HOW DO I GET MY BABY TESTED THROUGH CNBS? You can get a comprehensive newborn screening (CNBS) testing kit by contacting the following laboratories who offer tandem mass spectrometry screening to the general public:
Baylor University Medical Center Phone: 1-800-4BAYLOR http://www.baylorhealth.com/newbornscreening/ NeoGen Screening Phone: (412) 341-8658 http://www.neogenscreening.com/ Comprehensive newborn screening tests can detect up to 30 disorders and can be performed on people of all ages, not just newborns. Adults can be screened as well through TMS screening. With the exception of cystic fibrosis, age of the person does not prevent disorders from being detected. Cystic fibrosis, however, cannot be detected after a person is over 3 months old. The tests are performed by a simple prick in the heel, then blood droplets applied to the special filter paper. When ordering a testing kit for an adult, request for adult specimen collection procedure instructions which vary slightly. Cost for the test is between $20 - $25. NEW ENGLAND CONNECTION FOR PKU AND ALLIED DISORDER CONFERENCE The New England Connection for PKU and Allied Disorders held its annual conference March 18, 2000. The conference was a huge success with more than 200 people in attendance. A general synopsis of the day's events will be included on the Tyler For Life website within the next few weeks. BE SURE TO WRITE: Each month we request that you take the time to write a publication to encourage them to present an article on newborn screening and related disorders. It takes all of us joining together and writing to exhibit how many really care about newborn screening. This month, we plan to stack up the letters to: STORY SUGGESTIONS Dateline NBC 30 Rockefeller Plaza New York, NY 10112 Please take the time to write. We are encouraging everyone to send in their letters by April 30. If you would like a sample letter to copy and paste, simply send an email to comments@tylerforlife.com with the words "SAMPLE LETTER - DATELINE" in the subject line. Thanks you everyone in advance for your cooperation. CHECK IT OUT Check out the www.tylerforlife.com site which has an all new look, more functional features such as a search option, and great new related information. Many thanks to David Cooke, web designer, who volunteered to redo the site. Be sure to let us know what you think. OUR MAILING LIST Please take note that our mailing list is now being sent through an email management system called "List Bot". We recently moved our list to this system so that it would be much easier to manage. Our email list now has over 400 members and growing! If you need to change the email address that we use or would like to view the messages previous sent to this list, you may do so by visiting the List Bot member management page at http://tylerforlife.listbot.com New members can automatically sign up for the mailing list directly from our webpage. HOW TO CONTACT US DIRECTLY We are always happy to hear from you: Tyler For Life Foundation, Inc. 6340 Holborne Lane Douglasville, GA 30134-4023 Email : comments@tylerforlife.com Phone: (770) 947-6473 URL: http://www.tylerforlife.com
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