University of Maryland Brain and Tissue Bank (BTB), an arm of the NIH BioBank
University of Maryland Brain and Tissue Bank (BTB), an arm of the NIH BioBank
The BTB plays a crucial role in ensuring that brain and tissue donations are carefully planned and handled according to the highest standards. It serves as a vital conduit that never before existed, bridging the gap between donors and the scientists who can utilize these invaluable resources. As a key link in the processing of these donations, BTB follows delicate and highly specific protocols to preserve their integrity. This meticulous approach enables groundbreaking research, providing revolutionary access to scientists around the world who are working to unlock new understandings of neurological conditions like kernicterus.
pic-K (Parents of Infants and Children with Kernicterus
pic-K is the only organization solely dedicated to supporting families affected by kernicterus. Since its founding, it has been a lifeline for countless families navigating the challenges of living with this preventable yet devastating condition. pic-K provides vital resources, education, research and advocacy efforts, ensuring that no family faces kernicterus alone.
For many years, Miriam served as chair of pic-K’s board, working to strengthen its mission and expand its impact. Blue’s Gift is launching in close partnership with pic-K, building upon its legacy of support and advocacy. This collaboration reflects our shared commitment to not only improving the lives of those with kernicterus today but also driving the research, awareness, and policy changes needed to prevent future cases.
The work of pic-K has laid an essential foundation—bringing together affected families, amplifying their voices, and fostering a community dedicated to change. Through this partnership, Blue’s Gift can further its mission by focusing on scientific advancement and ensuring that the experiences of those living with kernicterus contribute to meaningful medical progress.
The Italian Liver Institute
The Italian Liver Institute
The Italian Liver Institute
Our dedicated colleagues in Italy have spent decades researching bilirubin neurotoxicity, producing an extensive body of published work. Through this invaluable partnership, their experienced team now has the opportunity to study kernicterus in human samples for the first time—a groundbreaking advancement. With this unprecedented access, they can test and verify previous findings, analyze the long-term effects of kernicterus at a cellular level, and precisely identify the specific cells affected. This deeper understanding is a crucial step toward developing targeted treatments, advancing the search for a cure, and ultimately improving prevention strategies.
Looking Ahead: Scientific Advisory Board
This spring, we are launching our Scientific Advisory Board, bringing together leading practitioners and researchers to collaborate and maximize the impact of this vital work.