Tuesday, September 23, 2008

Colorado grandparents donate millions for Down syndrome research institute

From The Denver Post. The Rocky Mountain News also has a story. In the picture, Hazel Miller leads some families in song at the dedication of the Linda Crnic Institute for Down Syndrome.


AURORA, Colo. — A little less than five years ago, John Sie's granddaughter, Sophia, was born with Down syndrome.

And Monday, Sie did what his heart told him to do. He committed $34 million to establish what he says will be the best research facility in the world to study the ill effects of Down syndrome, with the eventual aim of eradicating the syndrome.

"All my life, my m.o. is to see what is possible and doing the seemingly improbable," Sie said. "Four and a half years ago, we found our life mission when we knew Sophia was going to be born with Down syndrome," Sie said of himself and his wife, Anna.

The couple announced they are starting the Linda Crnic Institute for Down Syndrome at the University of Colorado Denver's Anschutz Medical Campus.

John Sie, founder and former chairman of Starz Entertainment Group, said it will bring together the world's foremost researchers, who will work at the University of Colorado Denver, the University of Colorado at Boulder and Children's Hospital in Aurora.

"We feel confident that they will be able to isolate the specific gene or genes" that cause the disabilities of children with Down syndrome, he said.

Sie emphasized that not only will research be done at the institute — named in honor of a UC Denver School of Medicine professor who died in a 2004 bicycle accident — but it will offer the "best clinical care in the world to children" who have Down syndrome.

The official spokesman for the new institute is Quincy Jones, one of the most influential jazz musicians of the 20th century.

Jones was elated about representing the new institute.

"I've been doing this all my life," he said Monday of his concern for the babies and youth of the world.

In 1985, he pioneered the model of using celebrity to raise money and awareness for a cause with "We Are the World."

"This is part of my DNA," Jones said as he looked around Sept. 22 at the many young children with Down syndrome.

Dr. Leslie Leinwand of the University of Colorado at Boulder and Denver, who is interim director of the Linda Crnic Institute, said the launch of the institute "is a landmark event for research in Down syndrome.

"This will attract the best and the brightest minds to Colorado to tackle this complex problem with our existing outstanding faculty," Leinwand said.

The announcement was attended by several hundred people, many with their children who have Down syndrome.

As the kids played, Michelle Sie Whitten, John Sie's daughter, reflected on what this will mean. She said it will probably mean a better world for all children with Down syndrome and a society where they are highly valued.

"It is meaningful because my parents will be able to leave a legacy not only for Sophia but all children and all people with Down syndrome," she said. "It is going to get better and better and better."