Summer 2007 Newsletter

CARES Foundation, Inc.

Way to Go West Virginia!

by Gretchen Alger Lin

On April 2, 2007, West Virginia Governor Joe Manchin III placed his signature on HB2583 completing the legislative process necessary to make screening of infants for 29 life-threatening, treatable diseases (including Congenital Adrenal Hyperplasia) mandatory in West Virginia. This expansion of the state’s newborn screening program from testing for only six diseases will save the lives of about 25 babies every year in West Virginia.

CARES member Gretchen Murphy took the lead on this and followed HB2583 as it made its way through both houses of the legislature lobbying hard for expanded newborn screening at every turn. CARES members across the state helped with calling Senators when the bill was pulled off the legislative calendar in the days before the close of the legislative session. Classic CAH-affected members Timothy Wyatt Nichols and Max Murphy were vital to this effort, giving real faces to the cause.

The Organic Acidemia Association also brought the voices of numerous affected individuals and families out in support of the bill. Members Leslie Pierce and her daughter Cadence who is affected by Propionic Acidemia as well as Josh Mayfield who has Glutaric Acidemia, Type 1, shared their personal stories with legislators encouraging their support of the bill, and they were present at the governor’s signing.

Joined by FOD Family Support Group, March of Dimes, National Urea Cycle Disorders Foundation and Save Babies it was through a united effort that newborn babies across the state will be saved from death, mental retardation and severe disability by early intervention and timely treatment of devastating genetic diseases.

Every baby deserves a healthy start. Way to go West Virginia!

Kansas

Less than a month after West Virginia’s victory, Kansas’ Governor Kathleen Sebelius signed SB11 – 2007 Health Care Reform Act – into law expanding her state’s newborn screening program too. The effort there was led by CARES Foundation member Tonia Kroll who, along with her husband Michael, traveled to Topeka to testify in favor of expanded screening. Their moving story of the first weeks of their daughter’s life along with that of other parents who had suffered due to the state’s failure to screen weighed heavily in the deliberations that followed. THANK YOU Tonia & Family!

And that brings us to Arkansas: the only state left in United States that does not screen for CAH. CARES Foundation member Gail Blucker along with the March of Dimes, Easter Seals, Save Babies and other national organizations are working hard to make expansion a reality, but we need your help. The time for action is now! If you would like to join the fight for Arkansas, please contact Gretchen Alger Lin at gretchen@caresfoundation.org.

Also, congratulations to Ontario, Canada, where they officially began screening for CAH on May 14, 2007!

Newborn Screening Packets for Parents

"Packets for Parents" is a program that provides free newborn screening packets to expectant parents in the United States who are unable to pay for them. Certain restrictions apply, and quantities are limited to a specific number of packets each month. For information please visit http://www.savebabies.org/NBS/packetsforparents.php or contact Save Babies at 1-888-454-3383.

Other News: NIH, Personalized Medicine
& Stem Cell Research

Legislative action

Over the past several months, CARES Foundation has been continually involved in the fight to ensure funding of the National Institutes of Health. This is of particular importance to orphan disease-affected communities like ours as most research would never even get started without appropriate funding of NIH.

We also have been keeping an eye on Senators Obama and Burr’s Genomics and Personalized Medicine Act of 2007 (S 976) which calls for improving the safety and effectiveness of genetic tests; something of great import to all CAH Community members who undergo such testing.

Finally, if anyone is interested in letting their voice be heard by President Bush in favor of or against the Stem Cell Research Enhancement Act (S. 5), please contact CARES Foundation for some options on how to influence him to make the right decision.