The White House will honor Kathy Giusti of New Canaan along with 12 other leaders and organizations who have promoted and used open scientific data and publications to accelerate progress and improve the world, according to a White House press release.
“As entrepreneurs, academics, and researchers, these Champions of Change have made an impact across disciplines – from archeology to biomedical research, and from the humanities to astronomy,” reads the press release. “At the event, these Champions will highlight initiatives that are helping make ‘open’ the default in scientific research. Open sharing of research results is a proven strategy for driving positive change. For example, the rapid and open sharing of genomic data from the Human Genome Project revolutionized biomedical research, and spurred major growth in the biotechnology industry.”
Additionally,the federal government’s liberation of Global Positioning System (GPS) satellite data for use by the private sector led to an explosion of geospatial information systems and the creation of many companies, smartphone apps, and car navigation systems, according to the White House.
The White House Champions of Change program was created as part of President Obama’s Winning the Future initiative. Through this program, the White House highlights individuals, businesses, and organizations whose extraordinary stories and accomplishments positively impact our communities.
Says the White House about Giusti:
Kathy Giusti is the Founder and Chief Executive Officer of the Multiple Myeloma Research Foundation (MMRF) and a multiple myeloma patient. Under Ms. Giusti’s leadership, the MMRF, working in close partnership 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 MMRF launched the CoMMpass study, a landmark study to define the molecular subtypes of the disease to drive toward precision medicine. The study will follow 1,000 newly diagnosed multiple myeloma patients longitudinally over at least five years, collecting comprehensive clinical data and tissue samples which will be extensively analyzed using cutting-edge sequencing technology. CoMMpass data will be placed into an open-access data platform, together with data from other MMRF-driven initiatives as well as from other sources entirely, to create the most robust set of clinical and genomic data in any cancer that is openly available to researchers worldwide. In 2011, Ms. Giusti was named to the TIME 100 List of the world’s most influential people and has received numerous awards and honors for her work, the Harvard Business School Leadership Award and an Honorary Doctorate from the University of Vermont.
To watch this event live, visit whitehouse.gov/live at 1 p.m. on Thursday, June 20. To learn more about the White House Champions of Change program, visit whitehouse.gov/champions.
Former baseball player and manager Bobby Valentine, right, poses with Paul and Kathy Giusti of New Canaan at the June 2013 MMRF race at New Canaan High School.