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Movie Throws Light on a Devastating Disease

The Early Show spoke with Valerie Estes and actress Laura San Giacomo about a TV movie based on the true story of Jennifer Estes, who at age 35, was diagnosed with ALS.

The film is about a vivacious young woman who is at the height of her personal and professional life. Having just launched a successful off-broadway theater group, "Naked Angels," Jennifer is living life to its fullest when she is unexpectedly diagnosed with the disease amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease, a deadly illness with no known cure.

Stunned by the news, Jennifer and two of her sisters, Valerie and Meredith, begin to research the implications of this devastating disease. What amazes the sisters is the fact that, although doctors have known about ALS for more than 100 years, little has been done to find a cure for this tragic affliction. As time passes, Jennifer's mobility degenerates and she slowly becomes a prisoner in her own body. Spurred by their intense love for Jennifer, Valerie and Meredith take matters into their own hands, meeting with doctor after doctor in an attempt to save her life.

Valerie, Tell me how many people have ALS?

That's a very tricky question, but at any given time about 30,000 Americans have it. People die so quickly from the disease it hard to get a good count and that is why the number isn't higher.

How did you and your sister, Meredith, react when you first found out about Jennifer?

It was devastating. Jennifer was the quintessential NYC girl, so the diagnosis seemed to come out of nowhere. Who knew what ALS was? After the initial devastation, we realized there was no medicine or cure for my sister and that was unacceptable.

When you realized there was no cure, what did you do?

We decided to start Project ALS and do something about it.

How did the movie come about?

Well, Jennifer is a producer by trade, and she has a lot of friends in the entertainment business. So she had an idea to bring the problem of ALS to the masses by making a movie about it.

What was it like watching your family’s story on screen?

It was great. We were all instrumental putting the movie together and we are happy with the finished project.

Did Jane Kaczmarek get you right?

I think she got my essense, which is super aggressive and a hard worker. She did a great job.

Did she consult with you before she took the role?

Not really. She didn't need to. The script was strong and she is such a good actress.

What is the current status of Jennifer?

She is 5 years into the disease. She still runs project ALS. She executive produced the movie and she still can speak. Project ALS is making sure there will be a cure for ALS some day.

Tell me about project ALS.

Right now the central focus of our research is stem cell transplants. For 2 years we've ben putting stem cells into laboratory models of ALS. And the results are very promising so far. This all happened before the whole controversy about stem cell research came about. Project ALS is the first group to match up scientists with stem cell research.

Project ALS has raised over $8 million and we have put 80% of that into research. I am the vice president of the organization and it's my full-time job.

What new treatments are available?

Thanks to project ALS there are a couple of experimental treatments in human trials. My sister is in one of them. And there are many more on the way.

Laura San Giacomo, who played Jennifer Estes, had this to say about her role:

What attracted you to the role of Jennifer Estes?

I think that the amazing story of these sisters is a great motivation, to put a face to this disease. It's very important to put a face to it. This project ALS is so important so I wanted to help.

How did ou prepare for the role?

Well I talked to Jennifer a lot on the phone. We had a lot of friends in common. We're of the same generation. Our paths sort of just missed each other. I also did a little work with some physical therapists so I could understand the movement.

Did you meet Jennifer?

I met Jennifer in Toronto while we were shooting. It is difficult for her to travel and we hung out when she was on the set.

How is she doing?

I think she's doing okay. It's never a piece a cake. When I talk to her, she's always up and joking and laughing. She gives a lot to other people so they don't worry about her.

How did they get so many big names to be in the movie?

Some of those people were really moved by the script so they just said yes, and she was friends with some of them.

I was reading in TV Guide that your son has cerebral palsy. How is he doing?

He's doing okay. He goes to school, in a charter school I helped start. He communicates with a computer.

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