New initiative to provide $600k to fund new research into Down Syndrome

Jul 1 2005

Today the University of Colorado and The Anna and John J. Sie Foundation of Denver announced The Sie Family Down Syndrome Break-Through Research Initiative. The initiative will provide $600,000 in grant funds to stimulate new scientific research on Down syndrome with the aim of enhancing cognitive ability. These are the first such grants provided to CU for a specific chromosomal condition and the first nationwide specifically for Down syndrome.

The Initiative will kick off with a summit meeting at the University of Colorado at Boulder on July 1 and will bring together some of the best minds in science to examine the current state of Down syndrome research and explore new and innovative research approaches. Nobel Laureate Tom Cech will be the moderator. The conclusions reached at the summit will establish the criteria for bestowing six separate grants.

Governor Owens has high praise for the initiative: "What the Anna and John J. Sie Foundation and CU are doing with this summit is truly pioneering work. I believe it will help scientists look at Down syndrome from the human perspective and it will help people with Down syndrome in years to come. I am proud that this kind of personal/community based initiative is happening in our state and I hope that it serves as a model for other states. It is a shining example of what the University of Colorado can do with its Systems Biology and University Without Walls philosophy."

"This is a very exciting initiative for the University of Colorado," said Elizabeth Hoffman, President of the University of Colorado. "The initiative will foster synergy and collaboration in conjunction with CU scientists and those with Down syndrome. Through CU's Colorado Initiative in Molecular Biotechnology to the Coleman Institute to the University of Colorado Health Science Center's Fitzimons campus -- we are able to harness the expertise of faculty across multiple campuses in order to address some of society's most pressing issues. I believe this initiative will produce those results."

Five of the six grants are earmarked for CU research and the sixth as a national grant outside the university.

The grants will cover approximately two years of research and there will be a mid-grant review which will bring all the grant recipients together to discuss their work and share their findings. It is anticipated that by the end of 2007, the results of each grant will be published. One measurement of success for the grants is the number of recipients that will continue and expand their Down syndrome related work with subsequent funding.

"We are so delighted to have Tom Cech as our moderator, and we are very grateful to Leslie Leinwand, the late Linda Crnic and so many distinguished scientists who contribute to this cause," added Michelle Whitten, Executive Director of The Anna and John J. Sie Foundation and mother of a 2-year-old daughter with Down syndrome. "I believe that this Initiative will have a major impact on Down syndrome-related scientific research. It will bolster existing research and stimulate new research that could later continue with funding from the National Institute of Health (NIH), and in turn lead to a major break through. We are determined to have long-term solutions and support, and hope we can serve as a role model for other communities partnering with their local scientific institutions."

Down syndrome results from having an extra Chromosome 21 (three instead of two). In 90 to 95 percent of all cases, Down syndrome is not genetic or inherited. The incidence of Down syndrome increases with advancing age, however, approximately 80 percent of children with Down syndrome are born to women under 35 years of age, since the majority of women giving birth are younger women.

About one in every 800 babies in the U.S. is born with Down syndrome making it the most frequently occurring chromosomal condition. Nationally there are approximately 350,000 people with the syndrome, and it is estimated that there are over 5,000 here in Colorado.

Decades of research into Down syndrome has yielded only modest information about its genetic complexities, and there are enormous gaps in the understanding of the extra chromosome and how it causes such a wide range of physical and cognitive anomalies in people with the syndrome.

"What makes this different from other Down syndrome research efforts is we're bringing together scientists who work on Down syndrome with those who don't to look at this from a fresh angle," said Leslie Leinwand, chair of CU-Boulder's molecular, cellular and developmental biology department. Leinwand will act as chair of the Initiative's grant selection committee.

The success of the Human Genome Project and new advances in molecular methods are giving researchers new tools to acquire a deeper understanding of the fundamental biological principles that govern life, according to Leinwand.

Participants in the summit include Tom Cech, Nobel Laureate; Leslie Leinwand, Chair of the Department of Molecular, Cellular and Developmental Biology (MCDB), CU; Larry Gold, CEO of Somalogic and a professor in CU-Boulder's MCDB department; John Sladek, Vice Chancellor for Research at the University of Colorado at Denver and Health Sciences Center; and David Braddock, Associate Vice President, CU System and Executive Director of the Coleman Institute. Other participants include Roger Reeves of Johns Hopkins University, Hans Lehrach of Max Planck Institute of Molecular Genetics in Berlin, Kathleen Gardiner of the University of Denver's Eleanor Roosevelt Institute, Steven Dekosky of the University of Pittsburgh, Xiang-Dong Fu of the University of California, San Diego, and others from the scientific community.

http://www.cu.edu