A Family Battle Against ALS
Tens of thousands of Americans suffer from Lou Gehrig's disease. Some suffer without much hope. But CBS This Morning Medical Correspondent Dr. Emily Senay has the story of a family that is not giving up.
Lou Gehrig's disease is amyotrophic lateral sclerosis, or ALS. It's a fatal wasting disease that gradually paralyzes the muscles, and for which there is no cure or effective treatment. It is also a rare disease, so research money is hard to come by. But for one sufferer and her family, none of these have been reasons to give up the fight.
Jenifer Estess was an active New York theater and film producer when she was diagnosed with ALS two years ago.
"I've seen my body go from a healthy young woman of 35 to needing help with everything that I do," Jenifer says. "When you realize this is a fatal illness, when it really sinks in, you have to grow up really quickly and face your mortality...and it's a devastating process."
Her doctors told her there was nothing they could do for her. But for Jenifer and her sisters, Valerie and Meredith, nothing wasn't good enough.
Valerie remembers: "There's a moment of reckoning you have to get busy, you have to start working, and so we started working."
Together the sisters started Project ALS to raise funds and awareness of the disease. With the help of old friends in the film community, ALS is getting plenty of fresh attention. Actors William Baldwin and Gina Gershon are on board, as is New York City's first lady, Donna Hanover.
"It obviously became very real to me, and that's why I'm here because we're trying to raise money," says Gina Gershon.
William Baldwin also feels strongly: "When celebrity is utilized in a responsible and constructive fashion it can be highly effective. I think in terms of raising awareness, in terms of raising funds, you can reach a much broader audience."
It's an audience that is listening. A Project ALS benefit last June raised $500,000. In addition, the Estess sisters have gathered a group of doctors and scientists on the cutting edge of ALS research.
According to Valerie, "We set out to assemble the most dynamic team and greatest minds around ALS and I think we've done that. We found that when it comes to ALS there lacks a sense of urgency. If we can infuse this whole research world with a sense of urgency perhaps we can come up with treatments sooner."
Their enthusiasm is catching on. There are already plans to expand the number of drugs being tested against the disease. Right now there is only one drug trial under way in humans for ALS.
Dr. Robert Brown, a neurologist, says:
"There really aren't that many patients and the big drug companies are reluctant to put millions of dollars into the research because the return in the market is not going to be high."
But for Jenifer Estess, even the smallest advance in the treatment or uderstanding of the disease would be worth her effort.
She explains, "I want to change the course of this disease. It's been here for 160 years and I want to say that we made a difference. No matter what happens I want to say that we made a difference."
Jenifer and her sisters have devoted all of their time to the project. The difference they make remains to be seen, but they are not doing badly so far. Their goal is to double their $500,000 fundraising effort this year.
Kicking off their effort is another star-studded fundraiser in Los Angeles Thrsday night, featuring performances by Melissa Etheridge and Randy Newman, and appearances by a host of stars.
For more information about Project ALS, call this toll-free number: 1-800-603-0270.
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