Jana Monaco, Advocacy Liaison

(Isovaleric Acidemia Parent)

Jana Monaco is the mother of four children and two of them have a rare inborn error of metabolism called Isovaleric Acidemia (IVA). Stephen, now twenty-four, suffered severe brain damage at age 3 ½ leaving him with severe disabilities and medical issues due to lack of comprehensive newborn screening at birth. Her daughter Caroline, now nineteen, was screened and diagnosed early with IVA sparing her of Stephen’s fate. Jana is a state and national advocate for newborn screening and has helped to pass legislation to expand newborn screening laws in all fifty states. 

She is a former member of the Secretary’s Advisory Committee for Heritable Disorders in Newborns and Children (SACHDNC), Jana is a member of the Virginia Genetics-Advisory Council and the Rare Action Network State Ambassador for the National Organization for Rare Disorders (NORD. Jana has been instrumental in passing legislation for various policy issues related to rare diseases including the establishment of the Rare Disease Advisory Council in Virginia in which she is the Vice Chair.
Jana also volunteers as the Advocacy Liaison for the Organic Acidemia Association advocating for patients and families living with organic acidemias and newborn screening nationwide. She also serves on the External Advisory Committee (EAC) of the Clinical and Translational Science Institute at Children’s National and has presented on newborn screening and rare diseases on Capitol Hill, with NORD, Genetic Alliance, the FDA, and the March of Dimes. Jana’s primary role is full time caregiver to her son Stephen who has accompanied her throughout her advocacy. 
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