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CNN Live Event/Special

Julia Roberts Testifies Before Congressional Committee

Aired May 09, 2002 - 12:21   ET

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
BILL HEMMER, CNN ANCHOR: In a moment we're going to go to Wall Street. But, first, we want to go to Washington. Julia Roberts right now testifying in front of a House committee on Rett Syndrome. We shall listen in Washington.

JULIA ROBERTS, ACTRESS: ... agonizing years, as parents had to wait for the cascade of symptoms to develop.

Today, due to the extraordinary gene discovery, the diagnosis is made through simple blood tests. While the task takes only moments, its results change lives forever. I have been blessed and have been touched by someone with Rett Syndrome, a little girl named Abigail.

Anybody have some water for me? Ask for money, ask for water, I might ask for lunch -- thank you.

Rett Syndrome could not suppress her sparkling smile and her inner light. Abigail -- her parents, David and Ronny (ph) and my family -- thank you Dr. Percy -- have been friends for a long time, and Abigail was my pal. We spent time together without words. We connected with our eyes. With her squeals of delight and her incredibly wicked sense of humor, she was a joy to be around and everyone who was ever near her loved her.

Abigail joined the film "Silent Angels" as a wonderful ambassador for Rett Syndrome. Then last June this silent disorder suddenly and unexpectedly took Abigail from us, and she was just 10 years old. It is easy to underestimate these girls because of their silence -- not so silent this morning.

And I like to think that's why Abigail and her family picked me, because I am so chatty. So in their quiet, I create the balance.

In the past, this committee has taken a chance on this little known disorder by providing important funding for scientific research. Over the last two years, that funding has paid tremendous dividends. For instance, we now know this gene is more prevalent than anyone ever thought in other well-known disorders from autism to learning disabilities.

Therefore, many hundreds of thousands of other Americans will share the benefits of Rett Syndrome research. And recognition of its importance, the genetics of Rett Syndrome, are now being taught in our nation's leading medical schools. Congress has within its power the ability to provide the funding needed to accelerate our understanding of Rett Syndrome. There is an urgent need now with this gene discovery to increase support for researchers and capitalize on their important work. Thanks to the continued leadership of Congressman Hoyer and the committee, funds already appropriated have helped to bring us to where we are today, facing a future that for the first time holds the promise of treating, preventing and even curing Rett Syndrome. Researchers are not cautiously optimistic, they are confident that they can master the disease if they have the continued resources to do it.

As you consider our request, our deeply heartfelt request, please keep my friend Abigail and my friends here and others that aren't here today in your hearts and in your minds. Her death was painful for her family and her friends, but Abigail's spirit motivates me and those with us today to raise our voices and the public's awareness about the urgent need for research funding of Rett Syndrome.

So I beg you to hear our plea -- thank you.

UNIDENTIFIED MALE: You can clap.

(APPLAUSE)

UNIDENTIFIED MALE: Thank you for an effective and moving statement. And it certainly will be something we will consider -- Mr. Young (ph).

UNIDENTIFIED MALE: Mr. Chairman, I already welcomed Ms. Roberts and the doctor.

UNIDENTIFIED MALE: Microphone.

UNIDENTIFIED MALE: Well, you may want to have Kathy Hunter speak.

UNIDENTIFIED MALE: Would you like to add to the statement?

KATHY HUNTER: I'm going to have Dr. Percy add to the statement.

UNIDENTIFIED MALE: All right.

DR. ALAN PERCY, RETT SYNDROME RESEARCHER: Thank you, Kathy.

Mr. Chairman, Mr. Hoyer, other members of the committee, good afternoon. I'm not very good with prepared remarks either. And I will perhaps digress a few times as I go through this.

Thank you very much for giving me the opportunity to tell you about a scientific endeavor that has the potential to help millions of children worldwide. You know that the burden of serious illness is especially heartbreaking when it afflicts young children. What you may not know is that the discovery in 1999 on mutations in a gene called MECP2 -- you'll hear that a lot -- set off a revolution in research into the causes of certain serious neurological diseases of children, such as Rett Syndrome and autism. Rett Syndrome is seen predominantly in females. Between age six to 18 months, these happy, playful children begin to lose communication skills and the ability to control their body movements and functions. Parents are forced to watch their children slip into a state of silent, immobilized withdrawal. The medical, psychological and social burdens on Rett Syndrome families are great.

Let me say that unfortunately Professor Rett died just before this gene was identified. But he pointed out very clearly that despite the fact that these girls could not communicate using their hands or their words, their eyes were an effective means of communication. So if you look at these young girls or women, you will see that they have some message in their eyes that is very penetrating.

The heart of this devastating disorder lies within the genetic structure called chromatin. Chromatin is the very tightly packed form of chromosomes that permit tens of thousands of genes to fit neatly into each tiny human cell. Chromatin is like a ball of yarn made up of chromosomes. The cell has ways of reaching into that ball to turn on just those specific genes it needs to make specific proteins exactly when the cell needs them.

The MECP2 gene is critical to both the development and the maintenance of a healthy brain. Normally, MECP2 stifles or regulates the action of certain other genes in the chromatin until they are needed or when they are no longer needed. When MECP2 is mutated and cannot work properly, some areas of the brain simply run wild, while others lapse into gridlock.

Therefore, the discovery of mutations in the MECP2 gene in girls with Rett Syndrome by Dr. Huda Zoghbi and her colleagues at the Baylor College of Medicine in Houston, gave researchers an important clue as to how the healthy brain develops in growing children. That was exciting in and of itself, but just as exciting, the discovery also contributed significantly to recognition of a new class of inherited neuro-developmental disorders based on these MECP2 mutations.

HEMMER: As the hearing continues there on Capitol Hill, we want to bring in Rhonda Rowland and talk more about Rett Syndrome. Chances are, a lot of us woke up this morning and did not consider this.

Rhonda Rowland here to talk about it now -- and Julia Roberts certainly bringing attention to it, Rhonda.

RHONDA ROWLAND, CNN MEDICAL CORRESPONDENT: That's right. And this is something I have to even say, after covering medical news for 15 years, I had to even look up what it is. But it is a neuro- developmental disorder that mainly affects young girls. And it doesn't show up until their about between the ages of six months and 18 months. And it's somewhat similar to autism, where they lose their ability to communicate, they don't have control over their movements. And often it's mistaken as autism or cerebral palsy.

So certainly, with Julia Roberts being involved in this, Bill, this is something that people will now have a name for. They'll know what it is.

HEMMER: Yeah, we'll talk about Julia in a second. Motor skills impacted, communications skills, as you mentioned as well.

ROWLAND: That's right.

HEMMER: Is there evidence that when Hollywood stars go to Washington that they indeed have an impact on certain causes?

ROWLAND: Indeed. In fact, there is a long history of this. It probably started back in the 1940s with Jerry Lewis and muscular dystrophy and starting with his telethons.

But even more recently, we know about Christopher Reeve, that he has gone to Capitol Hill asking for more money for spinal cord research. And, in fact, when he first came forward with his situation, he raised $5 million. And that's more than the American Paralysis Association raised during its first 13 years. And since he joined on, he has quadrupled their budget.

And then another example, David Hyde Pierce (ph) with Alzheimer's Disease. His father has this particular disease, and he has also testified before Congress. So has Maureen Reagan. And the Alzheimer's Association says that celebrities are an integral part of their ability to raise money.

Another example, Michael J. Fox for Parkinson's Disease. I mean it's just astounding the impact that he has had. And so far he has raised $16 million just for his foundation.

So, Bill, really a lot of examples about how celebrities have raised money.

HEMMER: What about influencing our behavior? We talked about lawmakers, do they affect us too?

ROWLAND: Yes, they certainly do. And a couple of examples of that, Nancy Reagan, you may recall that she developed breast cancer and was diagnosed in 1987. And at that time she chose to have a mastectomy. That is removal of her breast.

And there are a lot of doctors who criticized her for not going for the less disfiguring surgery, a lumpectomy. And there was a study done that found that after she made her decision to get the mastectomy there was a 25 percent decrease in the number of women choosing a lumpectomy. A huge impact there.

Another example is Katie Couric. We know that her husband had died from colorectal cancer, and she went very public with this. And two years ago she went live on "The Today Show" giving a colorectal screening test. And since then scientists say that these screenings have increased 20 percent. Just amazing, much more than any other kind of impact.

So there is definitely evidence that celebrities impact money -- the amount of money raised -- and also our behavior. HEMMER: Thank you, Rhonda.

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