The Quest to Save Nomin
In December 2014, the San Francisco Chronicle shared the story of Nomin Gan-Erdene, a 4-year-old patient at UCSF Benioff Children's Hospital Oakland battling a rare genetic disorder - neurodegeneration with brain iron accumulation - also known as NBIA. In a follow up article that appeared this May, reporter Erin Allday chronicled Nomin's adjustment to life in Oakland without her mother and her progress in the clinical trial with Dr. Elliott Vichinsky and his team at Children's.
NBIA can affect muscle function, including the ability to control the arms and legs, speak, chew and, in some cases, breathe. Nomin's sister passed away from the same disease in Mongolia, and ever since her family has been desperate to get her effective treatment. With no known cure for NBIA, Nomin and her father came to Oakland to participate in a clinical trial of a new therapy at Children's, one of only three locations in the world participating in the clinical trial.
Clinical studies within Children's are advancing treatment and cures. Significant advances in the prevention, treatment and cure of human disorders such as diabetes or cancer can only be achieved through clinical research. As part of Children's Hospital Oakland Research Institute's (CHORI) dedication to improving health and wellness across the globe, CHORI's six Centers of Research are all involved in a variety of innovative clinical and/or translational studies, which are highlighted within each of the Centers' web pages.
In addition, researchers and clinicians from CHORI and UCSF Benioff Children's Hospital Oakland are hard at work on a vast number of clinical studies every day. These studies not only help determine the most effective tools for treatment and cure, but also provide invaluable insight into the mechanisms of some of the most pernicious childhood diseases.