Executive Director, Newborn Foundation
Annamarie currently heads the integrated healthcare and health IT practice for Ainsley Shea | Ainsley Shea Potomac, working on critical healthcare issues, focused on medtech, biotech and health policy, standards, and rural and population health, with a special emphasis on newborn and pediatric health.
She is a Humphrey Policy Fellow at the Humphrey School Center for the Study of Politics and Governance and has provided municipal, state and federal testimony in support of critical healthcare,technology, environmental, agriculture and education policies. Annamarie founded 1in100.org following her own infant daughter’s diagnosis of Congenital Heart Disease (CHD) and has since been recognized for spearheading the national effort to ensure all newborns are screened for the most prevalent birth defect, afflicting 1 of every 100 newborns. The social community for 1in100 (facebook.com/1in100) is now home to more than 3500 families sharing CHD information, support and best practices.
She also co-founded www.newborncoalition.org and http://newborn-foundation.org/, the first national organizations focused on leveraging health, medtech and biotechnology to improve outcomes and reduce disparities specifically for newborns. The first policy priority was to obtain a federal recommendation of routine screening for heart defects. In September 2011, the U.S. Department of Health and Human Services formally recommended all newborns be screened for Critical Congenital Heart Defects (CCHD) The recommendation was endorsed by the American Academy of Pediatrics, the American Heart Association, and the March of Dimes. Leading up to the recommendation, Annamarie and the Newborn Coalition provided state and federal testimony, briefed officials at HHS, FDA, CDC, the White House, and more than 75 congressional offices, and currently serves on the federal Implementation Workgroup for screening for CCHD.
Annamarie is the lead instigator and policy liaison for The Newborn Heart Screening Project. Started as the Minnesota Newborn Heart Screening Pilot, the project has grown to multiple states and international jurisdictions with the aim of promoting early detection of Congenital Heart Disease in newborns. She is currently serving in an advisory capacity for multiple states in newborn screening and health policy and is also engaged in rural health, electronic results reporting and information exchange, point of care screening, and remote diagnostics aimed at reducing health disparities while improving access and delivery of quality care for maternal and child health domestically and internationally. Through her policy and health IT efforts, Annamarie works closely with the National Library of Medicine, the Congressional Quality Care Caucus, HRSA, CDC, CMS, the administration (ONC) on health innovation and IT. She has presented to the National Institutes of Health (NIH), the Health Resources Services Administration (HRSA), the Minnesota Department of Health, and the FDA. Most recently, Annamarie co-presented Grand Rounds at Children’s Hospitals & Clinics and presented at the World Ultrasound Health Congress, the Region 4 Genetics Collaborative and the Cardiology 2012 International Summit on Pediatric and Congenital Cardiovascular Disease. She is also on the faculty for the 6th World Congress Paediatric Cardiology & Cardiac Surgery held in Cape Town, South Africa. And lead investigator for the Newborn Foundation’s Innovation Incubator, working with public and private stakeholders to develop clinical tools that positively impact newborn health.
A longtime advocate of children’s and arts causes, she also serves on the boards of Artspace, Adopt A Room (University of Minnesota Amplatz Children’s Hospital), Preserving the Future of Newborn Screening, the National Birth Defects Prevention Network, the MN Pediatric Device Consortium, the American Academy of Pediatrics’ Congenital Heart Public Health Consortium, and the March of Dimes Public Affairs Committee. Annamarie has also served on the steering committees of the American Heart Association, Children’s Heartlink and Smile Network International. Annamarie recently received the prestigious 2012 Betty Hubbard Maternal & Child Health Leadership Award for advocacy on behalf of mothers and children with special health needs.She is a mother of three children, holds degrees in economicsand journalism from Iowa State University and did her master’s work in health economics.