FEATURED DISORDER OF THE MONTH

The April 2001 featured disorder of the month is LCHAD (3-Hydroxy Long Chain Acyl-CoA Dehydrogenase). Noah Jon Cooper was born 6 1/2 weeks early. Noah was delivered by emergency c-section due to a rare condition called Maternal Floor Infarction (MFI). This condition prohibits oxygen and nutrients from reaching the fetus. Research is currently being conducted on the possible link between MFI and LCHAD. Noah was not screened for LCHAD because it isn't part of the state mandated screening panel. Noah overcame many obstacles from the MFI and he was known as the miracle baby among family and friends. Yet at eight months old this miracle baby fell victim to undiagnosed LCHAD. View the full story at http://tylerforlife.com/Disorder%20of%20the%20Month%20-%20April%202001.htm

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MOTHER'S DAY DRIVE

Keep an eye on those mailboxes, because TFL is planning a Mother's Day fundraising drive. The drive is in memory of Tyler Wayne Mize, who passed away on Mother's Day 1998 of undiagnosed Galactosemia.  This fundraiser is planned as an annual event for TFL.

To meet its mission and its vision, the Tyler For Life Foundation must depend on continued and new support from individuals, clubs, organizations, and corporate sponsors.  Contributions are always very much needed and appreciated.  They are what allow us to continue our efforts.  Proceeds from this fundraising drive will help cover the costs of numerous things, including the TFL website, newsletters, handouts, posters, toll free help line, and numerous other costs to keep the foundation going.

Anyone who would like to participate in the fundraising drive can make a tax-deductible donation to:

Tyler For Life Foundation
6340 Holborne Lane
Douglasville, GA 30134-4023

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NBS AWARENESS LAPEL PINS

Newborn Screening Awareness Lapel Pins are still available for a suggested donation of $3 each.  You can order the pins by printing out the order form on the website at www.tylerforlife.com or you may call 1-888-454-3353 to obtain an order form.

Many thanks to the TFL Pin Project Coordinator Tiffany Young for her help in this project and to all the other groups who have participated in the pin campaign.

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VOLUNTEER CORNER

At the present time, the Tyler For Life Foundation is still operated solely by volunteers.  The success of TFL is due to the hard work of our volunteers.   TFL has many great volunteers, and we'd like to say "THANK YOU" to all of them for a job well done.  We wouldn't be here without you.

As always, TFL is in need for more volunteers.  We need volunteers for the following: 

Researcher/Writer
Persons are needed for a one-time research and writing project. Responsibilities include locating published medical data on disorders and writing a one page synopsis of the located data. An example synopsis will be provided.   Estimated time requirement is 8-10 hours per disorder.

Quilt Project Assistant
A person is needed to assist in the NBS Unity Quilt Project. Responsibilities include helping to find & set up quilt display locations, contacting potential sponsors for the project, mailing information to display locations and securing lodging for volunteers that will be setting up the quilt displays. The estimated time requirement for this position is approximately 2-4 hours per week.

A complete listing of volunteer positions is available at by clicking here.  You may contact the Volunteer Coordinator, Janine Clay, at volunteer@tylerforlife.com for more information on volunteering.

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TYLER, TEXAS HEALTH FAIR

Tyler for Life Foundation will be represented at the Smith County Health District Health Fair on Saturday, April 7th 10:00 AM to 3:00 PM at Center Court Broadway Mall in Tyler, Texas.

TFL volunteers will be handing out NBS pamphlets, TFL information, NBS Unity Quilt information and newsletter subscription forms.  TFL will also have NBS Awareness pins, Mini Baby Booties, and order forms for t-shirts available as well as a cookbook developed by Wanda Wilson.  Also, TFL volunteer, Deborah Hamburg, will be raffling a handmade Baby Afghan.

 

Many thanks to Tiffany Wilson, Wanda Wilson, Mary Lingle, Deborah Hamburg, Marcia Dunahoo, and Laura Clow who have all worked to present for TFL at this event.

 

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May 5-6
Pacific Northwest Regional Genetics Group
"Tell Your Story" Public Speaking & Presentation Workshop
Phone: (541) 346-2610
Email: pacnorgg@oregon.uoregon.edu
http://mchneighborhood.ichp.edu/pacnorgg/
Highline Community College Bldg 7
Des Moines, WA

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 8-10
Genetic Alliance Membership Meeting & People's Genome Celebration
mdavidson@geneticalliance.org
vwhittemore@geneticalliance.org
Web: www.geneticalliance.org
Phone: (202) 966-5557|
Washington, DC

June 21
National Urea Cycle Disorder Foundation
2nd Annual X-linked Golf Classic
Contact Person: Kirsta Johnson
Phone: (619) 466-7331
Email: gkmjohnson@home.com
Web: www.nucdf.org
Singing Hills Golf Course San Diego, Ca

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