There are 600 people in Israel living with ALS; 150 people die every year from it and they are quickly replaced by 150 newly diagnosed cases.
By KARIN KLOOSTERMAN
Stephen Hawking, the world-renowned physicist, is on a special mission. It's hard to imagine it from a man paralyzed by ALS (Lou Gehrig's disease) and whose every move relies on a team of doting assistants that he hires in shifts. At a dinner at Tel Aviv University last Tuesday night, they could be seen whispering in his ear and wiping his face lovingly, while securing wires and gadgetry to a computer so that Hawking, through small eye movements, could speak.
It has been this way for years. Hawking, 64, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) very early in his career as a physicist, at age 22. It is a particularly evil affliction that attacks the body's nervous system, resulting in complete paralysis and eventual death, usually within two to five years of diagnosis. While there is a small genetic link, for the most part researchers know very little about what causes ALS. There are 600 people in Israel living with the disease; 150 people die every year from it and they are quickly replaced by 150 newly diagnosed cases. It usually attacks people between the ages of 40 and 60.
The odds are against victims of ALS, but as Hawking's miraculous life story shows, one's spirit can prevail despite the odds. Since his diagnosis, Hawking has managed to sire three children and develop important theories in physics, which some insiders say continue the work of Albert Einstein. He also wrote a phenomenally popular best-selling book, A Brief History of Time. Today Hawking has rock-star appeal in both scientific and popular culture communities, and wherever he goes people get excited.
He shared some of his appeal last week at Israeli universities such as the Weizmann Institute, Hebrew University and Tel Aviv University (TAU). Through pre-recorded lectures Hawking asked his crowds, "Why are we here?" and, "Where did we come from?" He also met with Prime Minister Ehud Olmert to discuss the deteriorating political situation in the Middle East and met personally with ALS sufferers in Israel.
Hawking today is doing less science than he once did, but continues to lecture around the world about his theories on black holes, the state of the universe and the possibility of humans inhabiting other planets. But more importantly, perhaps, as participants at TAU last week agreed, Hawking's most important contribution to the world may be of a spiritual matter. Hawking's gift to mankind is the message that despite having a severe debilitating disability, life in any shape or form, is worth living.
"Just being able to have spent 40 minutes of my life next to this man would have been more than enough," says Judith Croasdell, Hawking's personal assistant, about her interview for the position two years ago. She went on to land a full-time job working for Hawking and joins a small team of four other general assistants. Croasdell is Hawking's emissary and trusted confidante when he doesn't have the energy or ability to speak to journalists or answer hundreds of emails.
There was one email that stood out from the pile that Croasdell needed to look into during the trip to Israel. She fished out a copy to show Metro. It was from an ALS sufferer in Israel (who's personal details cannot be revealed to protect his privacy) living with ALS and on the brink of suicide. Alarmed by the man's request regarding euthanasia possibilities in Europe, Hawking and Croasdell decided they would pay him a personal visit, which took place last Wednesday night. Their hopes were that the man would not go through with his plan to end his life.
But thankfully, other ALS sufferers are turning their disease into research projects that may benefit people everywhere. They have decided to fight their fate and pave the way for finding a new therapy or cure for ALS.
The leader of this group is Haifa resident and businessman David Cohen, 53, who three years ago, after experiencing slurred speech and clumsy motor movements, discovered he had ALS. Until then he was like other Israelis who enjoyed vacations in Sinai and practicing Thai Chi. Cohen shares a life with his wife Mally and their three children: Omer, Noa, and Daniel.
Cohen, with limited abilities in his hands and legs, is the founder of a new research foundation for ALS that started in 2004. Named the Israel Association for ALS, Cohen has since helped raise two million dollars (starting with $100 thousand of his own) for ALS research, which will have representation from all Israeli research institutions. Thanks to their efforts, there are currently three TAU and three Weizmann Institution scientists dedicated to ALS research, with others coming on board next year.
Tal Leder, manager for the Association was to have met with Hawking on Thursday in Jerusalem to tell him about the contributions Israelis have made in advancing treatments for ALS.
"I can tell you about the people who suffer from ALS in Israel," says Leder, who described their work as nothing short of a revolution. "Up until two years ago there was little or no research on ALS in Israel, because the people afflicted simply don't live long enough to study the disease progression," she said.
But Leder is convinced that Israel has an important role in advancing ALS research because of the country's history in developing drugs for neurodegenerative disorders, and also Israel's ability to work with a wide array of stem cell lines- embryonic and adult. Lastly, she notes, the drive for researching cures in medicine is deeply ingrained in the Jewish psyche. She points out a saying in Hebrew, "From Zion will come the Torah for all the nations."
TAU President Itamar Rabinovich recognized the University's contribution to ALS research at a meeting with Hawking last Tuesday night. "We know about ALS at TAU," said Rabinovich, and "we hope to find a remedy. We have made research on ALS a priority at TAU." Rabinovich went on to tell Hawking, "You are an icon and a model for what the human spirit can achieve."
Tom Phillips, the British Ambassador to Israel, whose embassy helped arrange the meeting, told Metro he agrees that one of the most important messages Hawking gives to the world is the amazing triumph of the human spirit. Phillips introduced Hawking, saying to the audience of physicists, scientists and journalists, "This is a story about a man who refused to be beaten and whose mind reaches new frontiers and knowledge. It is perhaps us, who are the disabled ones, in lacking his understanding and courage."
Noga Eshed, 24, is an engineering student from TAU who was thrilled and inspired to be able to come to the dinner reserved mainly for faculty members. Eshed was one of the youngest members in the crowd of about 70, and is not much older than Hawking was when he was diagnosed with ALS.
"I would ask him two questions," she told Metro after thinking about it for 15 minutes. "I would ask him about the energy coming out of black holes - which is one thing no ones knows anything about - and secondly that if he were me, a young scientist again at 24, what would he study?
"Hawking is talking about inhabiting other planets and galaxies because the future of this planet is unknown due to the effects of pollution and cosmic influences like our expanding universe," says Eshed after listening to Hawking's speech, which ended with questions of its own.
Hawking asked, "Will the universe continue to expand forever? Or will the universe collapse again?"
The audience of Israelis, one can surmise, asks these kinds of questions more often than those living in peaceful countries. For a brief moment in time, the Israelis were uncharacteristically quiet as they contemplated the idea.
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