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Kathy Ireland: The Tragic Shortfall in Down Syndrome Research

Oct 11, 2010 – 5:53 AM
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Kathy Ireland

Special to AOL News
Kathy Ireland
Courtesy Kathy Ireland
Kathy Ireland
(Oct. 11) -- Three months ago, my niece Polly was born. In the short time since, she's already undergone one extensive surgery to repair two holes in heart. And we've now learned that she has one additional opening on her heart that may or may not close without further surgery.

Like one out of every 800 babies born in the U.S., Polly has Down syndrome. But despite the fact that DS is a top genetic issue, perhaps the top genetic issue in the country, funding for it has been consistently reduced. This year, the National Institutes of Health expects to spend just $19 million on Down syndrome research -- less than 0.01 percent of its research budget, and less money than it plans to spend studying attention deficit disorder ($73 million), youth violence ($114 million), smallpox ($96 million) and more than 170 other subjects.

We have the power to change this.

The day after Polly's operation, I addressed the Global Down Syndrome Foundation in Washington, D.C. Conversations with Reps. Patrick Kennedy , D-R.I., and Cathy McMorris Rodgers, R-Wash., as well as Down activist and philanthropist Michelle Whitten (who is executive director of the Anna and John J. Sie Foundation) and Dr. Alan Guttmacher, director of the Eunice Kennedy Shriver National Institute of Child Health & Human Development, showed me there is an awareness of this issue and the need to address it.

I was particularly heartened by comments by members of the bipartisan congressional caucus, which is advocating an end to this tragic retrenchment. But there's an important voice missing. Yours.

Of course our country faces expanding health care costs, and we face a time of reduced resources. Certainly, priorities must be drawn. But we need to fight for our most vulnerable. I've always felt that this shared conviction is what defines us as a nation and as human beings.

I believe that one factor that reduces our common resolve is the sense that something is hopeless, that a crisis exists but there's nothing we can do about it. That most definitely is not the case with Down syndrome.

Every ounce of effort to understand DS and address it produces a pound of cure for many of its most tragic aspects. My work with HIV/AIDS and neonatal intensive care units has let me see firsthand the progress that's possible against Down syndrome. And it's helped extend Polly's precious life.

The hard fact faced by our representatives is that one of the urgent steps we must take in a time of economic challenge is reducing health costs. But knowledge plays an important role in curtailing long-term and even short-term costs. Knowledge is a wise economic investment. We are on the verge of medical breakthroughs with Down syndrome, and we can't let it fall from our doctors' hands.

Have you ever considered how you would deal with the personal experience of raising a child who has this extra chromosome? Aren't our children more precious than anything? I've seen the tide of love and spirit that has raised my sister, Cynthia, to this task. Every mom who faces this is our sister, yours and mine.

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When I watch the Special Olympics, it's a richer experience than any other competition. You are cheering for each and every competitor. Isn't that a beautiful experience? Each one carries the flag of our greatest common denominator -- our humanity.

Every person with Down syndrome in those races is giving it his or her all. So why are we running out on them? You and I can't slow down in our national effort to help them. We are in a race to help those with DS. We must run side by side with them, assuring them that the Down syndrome funding cuts, which the National Institutes of Health has faced, are reversed now.

I encourage you to do something today. Polly and other people facing this crisis desperately need your help. Urge your legislators to provide, even in these difficult economic times, the NIH funding needed to help our sisters and brothers make a better life for these children, who belong to all of us.

Kathy Ireland is CEO and chief designer of kathy ireland Worldwide.
Filed under: Opinion
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