NEW CANAAN, Conn. — New Canaan’s Kathy Giusti was honored at the White House as one of the Champions of Change, a person who promotes and uses open scientific data to speed progress and improve the world.
At the event, each champion highlighted different initiatives that help open scientific research, a statement from the White House said. The event took place on June 20 in Washington, D.C.
Giusti is the founder and chief executive officer of the Norwalk-based Multiple Myeloma Research Foundation and a multiple myeloma patient. Multiple myeloma is cancer that starts in the plasma cells in bone marrow.
The Champions of Change program was started through President Barack Obama’s Winning the Future Initiative, a statement said. Through the program, the White House honors individuals, businesses and organizations that improve society.
The foundation, working with academic and industry partners, has made unprecedented progress against multiple myeloma. Over the last decade, six new treatments have been approved by the FDA, the myeloma genome sequenced, and patients’ survival has doubled.
Most recently, the foundation launched the CoMMpass study to define the molecular subtypes of the disease. The study will follow 1,000 newly diagnosed multiple myeloma patients over at least five years, collecting comprehensive clinical data and tissue samples that will be analyzed using sequencing technology. CoMMpass data will be placed into an open-access data platform, together with data from other foundation-driven initiatives as well as from other sources, to create the most robust set of clinical and genomic data in any cancer that is openly available to researchers worldwide.