October 2000 Online Newsletter
SOMETHING TO THINK ABOUT October is National SIDS Awareness month. Over 100,000 children have died from SIDS in the last 25 years. It is estimated that 5% of all SIDS cases are actually cases of Fatty Oxidation Disorders (FOD); disorders detectable through expanded newborn screening. This means that over 5,000 deaths could have been prevented. Almost four million babies a year are born in the United States. About 3,000 of those babies will die from SIDS each year. And since screening for Fatty Oxidation Disorders is still not common practice in the US, 150 of those will die from preventable deaths from disorders detectable through newborn screening. UNITY QUILT We are very excited to announce the commencement of a new project that will involve families from all disorders in a unified effort. 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. To find out how to participate in the project or to learn more about the project, please visit our website at www.tylerforlife.com under the "NBS Unity Quilt" icon. PIN AWARENESS CAMPAIGN The awareness pin campaign has been a great success for all the groups involved. Not only did the groups meet the goal of 20,000 pins, they exceeded this goal greatly by selling more than 26,000 in all. The Tyler For Life Foundation was able to sell more than 16,000 pins itself. Many thanks to all the volunteers who helped with this campaign. It would not have succeeded without your help. Thank you. Carrie Hrichak of Bethlehem, Pennsylvania sold the most pins for TFL and won the $50 savings bond. She sold 350 pins, collecting a whopping $716 in donations in all. Carrie arranged a "NBS Awareness Night" at a local tavern in her area. The tavern, Tally Ho Tavern, graciously donated $1 of the usual cover charge for every person that attended the event. Carrie is the mother of 3-year-old Nikki, who has Glutaric Acidemia. HANDOUT AMERICA CAMPAIGN Tyler For Life Foundation, Inc, is excited to announce that we have launched a national campaign: "Handout America", where volunteers "handout" pamphlets intended for expectant parents, to be displayed in offices, clinics and hospitals of the healthcare forum (OB/GYNs, Pediatricians, hospitals, anywhere that sees children and families). These pamphlets entitled "A Parents Guide To Newborn Screening" are available at no cost to healthcare forums to encourage their support and to make available to their patients. If you would like to help by volunteering to handout please use the order form on our website at www.tylerforlife.com or simply email Kileen Hall at kileen@tylerforlife.com with your address and # of pamphlets you want. We are suggesting a maximum of 10 pamphlets per Dr. office, eliminating waste if they do not participate. They will be given information on how to order more. VOLUNTEERS We need people to handle numerous things, ranging from volunteering a few hours a month to a mere few minutes. We need people to do things as simple as proof our website for typographical errors or mail out information to people requesting it to people to write our monthly newsletter or be the TFL state contact in your state to keep up with what's going on in NBS in your state. Depending on your availability you can decide what task is best for you. We have many other positions that we need volunteers to help with. If you are interested in volunteering to help with some of these tasks, please contact our volunteer coordinator directly at volunteer@tylerforlife.com. She will provide you with a list of tasks we currently need help with. Please visit our volunteer web pages at http://members.tripod.com/~tyler4life/index.html for a full listing of the tasks we need help with. STATE COORDINATORS NEEDED The Tyler For Life Foundation is currently setting up state coordinators and committees to help advocate for NBS in each state. If you are interested in volunteering to be the TFL representative for your state, please contact our National NBS Program Director, Tiffany Young at tiffany@tylerforlife.com. These committees consist of 2-3 contact people for each state who represent the Tyler For Life Foundation in that state. Responsibilities include learning about the NBS program in your state, becoming actively involved in the NBS program there, and providing quarterly reports to TFL about what is going on in NBS in your state. TFL will use the information you provide to us to compile a list of disorders that are screened for in each state, announcements on what states are planning to implement expanded screening, etc. CHRISTMAS CARDS TFL has put together some NBS Christmas cards that will be available on October 15. The cards are a beautiful design donated by Mary Lingle of the FOD Family Support group. Mary's daughter died from undiagnosed MCAD and this year's card's will be a tribute to her daughter and all the other children who have died or suffered needlessly from disorder detectable through newborn screening. Keep your eye out for this information. All proceeds from the cards will benefit the Tyler For Life Foundation. HELP SUPPORT TFL WHEN YOU SHOP ONLINE You can now shop on-line and benefit the Tyler For Life Foundation at the same time! Visit our new mall at www.npsmall.com/tylerforlife.asp and shop at your choice of 140 merchants. You pay the same low prices, and we get a generous commission of up to 14% of your purchase price. Your shopping is secured, and your privacy is fully respected. Shop with merchants like Amazon, CDNOW, Office Max, The Disney Store, Dell Computers, L.L. Bean, Florist.com, and many more. FEATURED DISORDER OF THE MONTH This month's Featured Disorder of the Month is Jordan Bulcher. Jordan is from Columbus, Ohio and has Maple Syrup Urine Disease (MSUD). You can learn more about Jordan and MSUD at http://tylerforlife.com/Disorder%20of%20the%20Month%20-%20October%202000.htm . PHOTO ALBUM Photos and stories are being collected for a Faces of NBS photo album. This album will be used to share the lives and stories of children affected by NBS when educating people on the importance of NBS. If you would like for your story to be included in this album please email your child's photo along with name, address, child's age in photo, and a short story about your child's life and the impact NBS, or lack of it, has had on the life of your child. Please limit stories to one page. Stories and pictures may be used in our Featured Disorder of the Month project. Photos can be snail mailed to Tyler For Life Foundation, c/o Photo Album Project, 6340 Holborne Lane, Douglasville, GA 30134-4023. However, please email all stories so that they don't have to be retyped. 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. SOFTBALL TOURNAMENT The 1st Annual TFL Softball Tournament and Fun Day Fundraiser was held September 30th at Fairplay Park in Winston, Georgia. The tournament was a great success. Many thanks to all the volunteers, sponsors and the teams that played in the tournament. Also, a special thank you to World Championship Wrestling Superstar Buff Bagwell for his personal appearance and autograph signing at the tournament. Again, many thanks to all who helped make this tournament a success. We couldn't have done it without you. You can find out more about the tournament and see pictures from all the fun on the website. NBS DISCUSSION GROUP You can join in on the Newborn Screening Discussion group by sending an email to NBSAdvocacy-subscribe@listbot.com The list serve is open to persons, both medical professionals and consumers, interested in newborn screening advocacy. Tyler For Life Foundation, Inc. 6340 Holborne Lane Douglasville, GA 30134-4023 Email: info@tylerforlife.com Phone: (770) 947-3638 Toll Free: (888) 454-3383 Fax: (770) 947-8507 www.tylerforlife.com NEWBORN SCREENING: Saving Babies One Foot At A Time
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