Go to the mobile version of this Web site.

Login | Contact Us | Site Map | Paid archives | Electronic edition | Subscription Questions | Extras

Home › News › Education

Millions will go into institute for Down syndrome

By John C. Ensslin, Rocky Mountain News (Contact)

Published September 23, 2008 at 12:05 a.m.

Text size  
John and Anna Sie cuddle with their grandchildren, 2-year-old Patrick Whitten, left, and 5-year-old Sophia Whitten, in the Sies' Denver home. The Sies have committed $34 million through the Anna and John J. Sie Foundation to create the Linda Crnic Institute for Down Syndrome. "Up until now, the history of research in Down syndrome was more or less incremental," John Sie said.

Photo by Javier Manzano / The Rocky)

John and Anna Sie cuddle with their grandchildren, 2-year-old Patrick Whitten, left, and 5-year-old Sophia Whitten, in the Sies' Denver home. The Sies have committed $34 million through the Anna and John J. Sie Foundation to create the Linda Crnic Institute for Down Syndrome. "Up until now, the history of research in Down syndrome was more or less incremental," John Sie said.

More Education

More stories »

John Sie has a straightforward goal when it comes to Down syndrome.

The retired cable television magnate doesn't just want to finance incremental study of the condition. Over the next 10 years, he hopes to help scientists cure it.

To that end, Sie and his wife, Anna, announced Monday that they have committed $34 million to create the Linda Crnic Institute for Down Syndrome.

The institute will be located at the University of Colorado's Anschutz Medical Campus. It will be a combined venture involving CU and Children's Hospital.

By 2018, Sie hopes the organization will grow into a $150 million operation employing 160 people, including 17 scientists.

One of those scientists comes on board in November. Neurologist William C. Mobley will serve as the institute's executive director.

Mobley said eradicating the effects of Down syndrome is a worthy goal, but he tempered expectations a bit.

"That bold position is something we should aspire to," he said, but added he was more comfortable with the idea that in 10 years scientists will understand a lot more about what can be done about the most negative aspects of the disorder. "We're going to be hopeful and realistic at the same time," he said.

The Sies' gift is the culmination of a five-year journey that began with the birth of their granddaughter, Sophia, who, like one in every 733 babies in the United States, was born with Down syndrome.

The disorder is caused by all or part of an extra 21st chromosome. It results in developmental disabilities and other medical complications. About 400,000 Americans have Down syndrome.

Sophia's parents, Michelle and Tom Whitten, had befriended

Crnic, a professor of pediatrics and psychiatry who became a mentor and inspiration to the couple. Crnic was killed in a bicycle accident in 2004.

The following year, Nobel Prize winner Tom Cech and Leslie Leinwand of CU-Boulder helped organize a summit that brought top scientists from around the world to Boulder to discuss research on Down syndrome.

That symposium led to 13 projects that Sie supported with $1 million. Some of those projects are starting to show results, he said.

Sie, who founded the Starz cable television channels, is confident the scientists will be successful.

"We feel very fortunate that - right in our backyard - history is in the making," he said.

Comments

  • September 23, 2008

    3:24 p.m.

    Suggest removal

    Duckster writes:

    It's good to see money actually spent on solving medical problems that harm lives through no fault of the victim instead of being wasted on lifestyle choice diseases like AIDS.

    http://lagniappeslair.blogspot.com/

  • September 23, 2008

    5:07 p.m.

    Suggest removal

    DownSyndromeStoryteller writes:

    While I love my daughter with Down syndrome dearly and only see perfection in her, I know that she will benefit from this research especially as she grows older. This is something I would do if only I had the millions to spare! Thank you, Mr. and Mrs. Sie for your generosity.
    http://down-syndrome-facts-and-fictio...

  • September 23, 2008

    9 p.m.

    Suggest removal

    Noia writes:

    Someday...maybe there will be a fund to help socially inept people like you Duckster.