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Friday, October 24, 2014

Highlighting How Federally Funded Research Improves Health Ensures Continued Support for Science

FASEB Vice President for Science Policy Hud Freeze, PhD, is driven by the search for new treatments for patients with rare genetic diseases. Specific targets are mutations leading to defects called Congenital Disorders of Glycosylation (CDG). Dr. Freeze is equally passionate about the need to explain how finding cures starts with research to understand basic biological processes, much of which is funded by grants from the federal government. To ensure improved health, he and the FASEB leadership urge scientists to explain their work in public forums and to the media. Some examples of Dr. Freeze's efforts in this regard are linked here: 1) a San Diego TV show with a child suffering from a rare genetic disorder (http://link.brightcove.com/services/player/bcpid1649263564001?bckey=AQ~~,AAAAA5PNMME~,K3tOT-PuafsBOFardsNAXlIchcEkjy_p&bctid=3547868835001); and 2) a video from the Global Genes 2014 Rare Patient Advocacy Summit, session 9, from about minute 11 to 18:40 (http://globalgenes.org/2014summitvideos/).

Contact Person: Joseph Carey (jcarey@faseb.org)