The Fight for Newborn Screening

Below is the timeline of the Monaco's struggle to advance newborn screening.

• May 2002 - Tom Monaco speaks after all weekend masses at their local church to tell Stephen's story and to raise money for the annual "Save Babies Through Screening" Mother's Day drive. Results of the weekend raised over $5,000 which was instrumental in the development of a newborn screening awareness video to be distributed to hundreds of expectant parent classes and hospitals throughout the country.



• June 2002 - Stephen and Family attended Senator Dodd (Dem, CT) subcommittee hearing on Newborn Screening



• June 2004 - Jana Monaco testifies at the inaugural meeting of the Heritable Disorders And Genetic Diseases In Newborns And Children Advisory Committee of HRSA in Washington, DC.



• September 2004 - Jana Monaco spoke at the second meeting of the Heritable Disorders And Genetic Diseases In Newborns And Children Committee of HRSA in Washington, DC.



• September 2004 - American College of Medical Genetics recommends a panel of 29 disorders that all states should include in their newborn screening programs.



• October 2004 - Jana Monaco spoke at the Virginia Genetics Advisory Committee meeting in Richmond, Virginia.



• November 2004 - Jana Monaco speaks at a dinner entitled "Consequences of a Newborn Metabolic Screen", hosted by the Northern Virginia Pediatric Society.



• December 2004 - Jana Monaco attends a town hall meeting at the Prince William County Government Complex, presenting topic of newborn screening on federal and state level asking delegates and senators to vote on the upcoming bill in the Virginia General Assembly.



• December 2004 - "Stephen's Story" is published in the December issue of Exceptional Parent Magazine.



• January 2005 - Jana testifies in Richmond, for a second time with Tom, Stephen and Caroline by her side, before a house subcommittee to expand newborn screening in Virginia. Jana continues to attend and provide public comment at the regular Advisory Committee meetings.



• Spring 2005 - Jana is selected to the New York-Mid Atlantic Regional Collaborative Advisory Committee



• April 2005 - Governor Warner signs HB 1824 to expand Virginia's Newborn Screening Panel from 9 to 29 disorders.



• April 2005 - Jana joins the Children's National Medical Center LEND Program and becomes a member of the Family Faculty.



• September 2005 - Jana receives the Maternal and Child Health Bureau Director's Award.



• December 2005 - Long term photo spread for local newspaper, the Potomac News.



• January 2006 - Stephen's Story appears in American Baby Magazine.



• March 2006 - Virginia commences with expanded newborn screening as directed in HB 1824, sponsored by Delegate Jeff Frederick.



• March 2006 - Jana participates in a video and press conference for PhRMA (Pharmaceuticals Manufacturing Association).



• July 2006 - Jana attends the Advocacy in Action Workshop for the Genetic Alliance.



• September 2006 - Jana becomes a National Genetic Policy Summit panel member.



• December 2006 - The Monaco family appears in Newsweek Magazine.



• December 2006 - Jana is appointed as a new member to the HRSA Advisory Committee for Heritable Disorders and Genetic Diseases in newborns and children.



• March 2007 - Jana, Stephen and Caroline appear on the 97.1FM radiothon for the Children's National Medical Center.



• April 2007 - Stephen and Caroline are chosen for the Children's National Medical Center fundraising letter.



• June 2007 - The Baltimore Sun newspaper covers the family story.



• July 2007 - Ivanhoe Broadcasting releases story on Monaco family and newborn screening to national affiliates.



• October 2007 - Jana appointed to the Children's National Medical Center Patient/Family Advisory Council



• December 2007 - The Newborn Screening Saves Lives Act passes through the U.S. Senate.

Copyright © 2002-2008 Brandon Weiss. All Rights Reserved.