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Global Down Syndrome Foundation, Linda Crnic Institute for Down Syndrome Co-Host first ‘DOWN SYNDROME: National Conference on Patient Registries, Research Databases, and Biobanks’

December 3, 2010

WASHINGTON, Dec. 3, 2010 /PRNewswire-USNewswire/ — The Global Down Syndrome Foundation, the Linda Crnic Institute for Down Syndrome, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) will co-host the first “DOWN SYNDROME: National Conference on Patient Registries, Research Databases, and Biobanks” on December 2-3,2010 in Rockville, Maryland.

The conference aims to address the lack of a national Down syndrome medical registry and biobank by bringing together database and biobank experts with Down syndrome experts. The facilitated break-out groups and reports will highlight major issues and next steps.

A total of 70 experts from around the nation will attend the conference. Dr. Edward RB. McCabe, Executive Director of the Linda Crnic Institute, and Dr. Yvonne Maddox, Deputy Director of the NICHD, will moderate the conference which includes presenters such as the CDC’s Sonja Rasmussen, Sharon Terry from the Genetic Alliance, Petra Kaufmann from NINDS, Len Abbeduto from the Waisman Center, Stephanie Sherman from Emory University, Susana Serrate-Sztein from NIAMS, Elaine Collier from NCRR, Mary Lou Oster-Granite from NICHD, Jeff Krischer from University of South Florida, Nancy Wexler, Columbia University, Roger Reeves from Johns Hopkins University, Melissa Parisi from NICHD, Dorit Berlin from Correll Institute of Medical Research, Jaffa Rubenstein from ORDR, Karl Feininger from University of Colorado Anschutz Medical Campus, and Steve Williams from Soma Logic.

“There is one simple reason that we urgently need to have this conference and create a path towards a Down syndrome medical registry and a Down syndrome biobank – it will significantly improve the lives of people with Down syndrome and they deserve the best medical care and outcomes,” stated Edward McCabe, MD, executive director of the Linda Crnic Institute for Down Syndrome at the University Of Colorado School Of Medicine. “This is just the start and we are grateful to NICHD for partnering with us and for believing in a brighter future for people with Down syndrome.”

Deputy Director of NICHD Dr. Yvonne Maddox agreed, “We are dedicated to working with the Global Down Syndrome Foundation, researchers, and organizations that seek to improve the lives of people with Down syndrome. This is an important step towards realizing our October 2007 National Institutes of Health Research Plan on Down syndrome.”

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome has the single focus of eradicating the medical and cognitive ill effects associated with Down syndrome and is the first organization to comprehensively address basic research, clinical research and clinical care, all under one umbrella. The Institute is made possible by the generous support of founding-donors Anna and John J. Sie, whose granddaughter Sophia was born seven years ago with Down syndrome. The Anna and John J. Sie Foundation has committed $22 million dollars to establish the Institute as the worldwide beacon for research and care. For more information about the conference visit the Linda Crnic Institute for Down Syndrome online.

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation, established in 2009, is a public nonprofit that is dedicated to raising an additional $12 million over 10 years for the Institute. Last year, with the help of the Institute’s international spokesperson, music icon Quincy Jones, the Global Down Syndrome Foundation raised critical awareness and dollars for the Institute.

The Institute is a unique partnership between the University of Colorado Anschutz Medical Campus, the University of Colorado at Boulder and The Children’s Hospital. Each organization has committed space, personnel and overhead to the Institute. Specifically at CU-Boulder, the Institute supports Down syndrome researchers and faculty including an endowed professorship.

About the University of Colorado School of Medicine

Faculty at the University of Colorado School of Medicine work to advance science and improve care. These faculty members include physicians, educators and scientists at University of Colorado Hospital, The Children’s Hospital, Denver Health, National Jewish Health, and the Denver Veterans Affairs Medical Center. Degrees offered by the School of Medicine include doctor of medicine, doctor of physical therapy, and masters of physician assistant studies. The School is located on the University of Colorado’s Anschutz Medical Campus, one of our campuses in the University of Colorado system. For additional news and information, please visit the UC Denver newsroom online.

About the Eunice Kennedy Shriver National Institute of Child Health and Human Development

The NICHD was initially established to investigate the broad aspects of human development as a means of understanding developmental disabilities, including intellectual and developmental disabilities, and the events that occur during pregnancy. Today, the NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute’s Web site at http://www.nichd.nih.gov/.

Contact: Anca Call, 720-320-3832, acall@globaldownsyndrome.org

SOURCE Global Down Syndrome Foundation


Source: newswire



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