GREAT WORK!!! I wish that I could have been there but with my new baby (and two boys ages 7 and 3 years old) and going back to work, it was too hard for me. I hope to have Kelly come to the Washington DC area soon too ... so people in Maryland, Virginia, Pennslyvania... and people that go to the NIH from all over the country, can come and hear a speaker from this area. So think of when (what day of week is good for you - is Saturday or Sunday okay? if the speakers are willing to give up a weekend - hmm.. unlikely)... topics... one will be the newborn screening in Virginia. The law was passed!!! And it will begin in Jan 02.  We need to follow up with the Health Department. Feel free to call the number below and ask them if you can be on the advisory committee or review the materials. Look at the web sites in Tennessee and North Carolina (if there are web sites on CAH there - what education programs do they have in NC and TN??). Make suggestions on education and awareness!!! Call or write (email) your newspapers and hospitals ... tell them that is a new law and they need to know about it. email me if you want - preston@kreative.net

 Here is what Senator Ticer's aide wrote to me :

Some time ago I said I would send all of you the results of our work on
including CAH in newborn screening, and I am finally getting it done.

As you may already know, the Newborn Screening Program, a component of the Genetics Program in the Division of Women's and Infants' Health in the Virginia Department of Health (VDH), receives positive screening results from blood samples taken from newborns who are screened for genetic disorders from
the Division of Consolidated Laboratories, Department of General Service (DGS).  VDH staff notify physicians of positive diagnoses so they can contact parents and offer information, counseling and treatment for their baby.

Implementation

After SB 1007 became law, VDH began working with the DGS to add the test for CAH to the seven tests currently being used to screen newborns.  The lab is responsible for purchasing and testing equipment and incorporating the screen into existing testing.  In collaboration both agencies are developing a curriculum on CAH to be used in training staff at hospitals who will test newborns for CAH.

VDH has contracted with a nurse to develop and plan training, which will take place in November and December.  At the same time, DGS will be testing the equipment and beginning a pilot program to ensure the quality of testing.

VDH is responsible for developing simple brochures for health care
professionals and parents on CAH.  Brochures will be distributed in hard copy and will also be available on the Office of Family Health Services web site at http/www.vahealth.org/genetics/index.htm.  Tennessee's and North Carolina's training programs and brochures are being adapted for use in Virginia.

The program will complete training, testing, and materials development by the end of this year in time to begin statewide testing for CAH by January 1, 2002.   For more information contact either CJ Connor (804) 371-8836 or Sharon Williams (804) 371-4103 in the newborn screening program at VDH.

I hope you find this information useful, and I am so pleased that we have brought this effort to such a satisfactory conclusion.  Thank you forhelping.

Best regards,  Peggy Papp,  Aide to Senator Patsy Ticer