Sacrifice for a sister's survival

Sacrifice for a sister's survival

Project ALS

NEW YORK, Mar. 1 A remarkable bond between three sisters was put to the test when one was diagnosed with an incurable disease. These sisters have not just rallied around a loved one; they have put their lives on hold and given up everything to wage the fight of their lives.

JENIFER ESTESS is imprisoned in a body that is slowly shutting down. She is dependent on others for even the simplest task.
To be candid, this is a horrific situation, she said. It just reminds you of being in jail for a crime you haven't committed.

A vibrant New York theatrical producer, she was only 35 years old when diagnosed three years ago with ALS, amyotrophic lateral sclerosis, or Lou Gehrig's disease. Doctors told her there was no cure and no hope. Estess told doctors their verdict was simply unacceptable." I cant deny that I have this illness, but I cant accept that there's nothing that we can do about it, she said.

Instead of giving up, she and her two sisters, successful business professionals, are fighting back. They started Project ALS, run from Jenifer's New York City apartment. They don't just strategize. The sisters also take their sales pitch to the boardrooms of corporate America. They've also tapped into Jenifer's theater contacts, many of whom are now Hollywood celebrities, to raise nearly $2.5 million. They give the money to scientists and then hold them accountable.

Its nothing for Valerie or Meredith or Jen to page me anytime, day or night, and say what's the data look like?, said Dr. Evan Snyder of Boston Children's Hospital.
Jenifer's sister Alison explains their success: What we've come to realize is when you bring this kind of persistent effort to bear, science can move so quickly.
Valerie puts it more bluntly: We are terrific at cracking the whip.

SECRET OF THEIR SUCCESS Already there are signs that Jenifer's pluckiness and her sisters persistence are paying off. For a change, in labs from Baltimore to Boston, researchers are now collaborating and making rapid progress on possible cures because of the Estess sisters.

Its all because of them, said Dr. Jeffrey Rothstein of John Hopkins University. We've been able to complete research in six months that would normally take us two years to complete. For three career women who have put their professional lives on hold to help their sister, its more than a crusade. It is truly a love story. She's what were all about, said Meredith. Were close. I mean, I don't think you could really get much closer. Were kind of one person.

For now, Jenifer is holding her own, buoyed by the support of sisters, nieces and nephews. She's bolstered, too, by Project ALS — which for her could literally mean life or death. We can obliterate it. Its an unnecessary evil, she said. That's what keeps me going. I don't mean a false optimism. Its not about that. Its about saying yes when everybody else says no. While they acknowledge it may be too late for Jenifer, they vow it will not be too late for others.

The Estess sisters started a business to help Jenifer fight amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease. 

 Project ALS
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Jenifer Estess

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