Racing against time

By Tuvit Neizer

Avichai Kremer's face lights up when he receives a telephone call from Dov Lautman. Weak signs of a smile can be discerned. Kremer, aged 32, has been suffering from ALS (Amyotrophic Lateral Sclerosis) for the past three years. He is very limited when it comes to mobility or communication. He can hear Lautman, the president of IsrALS, and himself, an ALS patient, through a speaker attached to the telephone, while his mother speaks for him. Lautman, who will meet Kremer in a few days, ends the conversation by saying, "I love you, Avichai."

It is difficult not to admire Kremer's work and his optimism. He has not rested since the day he was informed that he was struck by ALS, also known as "Lou Gehrig's Disease," named after the famous baseball player afflicted with the disease in 1939. Kremer, a Haifa native, has a degree in computer science from the Technion - the Israel Institute of Technology - and worked as a project manager at Elbit. He was enrolled at Harvard for an MBA in 2004. When he began feeling a weakness in his fingers, he underwent an MRI (Magnetic Resonance Imaging) test, which indicated that he might be suffering from a nerve disease, a diagnosis that was discounted because of his young age. While Kremer was preoccupied with the tumult of beginning a new academic year, as well as other issues demanding his time and attention, the disease quietly developed in his body. Only in November 2004 did further tests, conducted in Boston, point to a high probability that he had ALS.

"During his two years of study in Boston he was able to communicate," says his mother Hedva, sitting by his side. "Initially, the difficulties were in his hands. Toward the end of his studies he was swaying a little, in a duck-like gait."


Kremer is now taking Rilutek, "the only medication that might delay his reliance on artificial respiration for two or three months," his mother says, "and he is taking part in an experiment conducted by Duke University." "From the time he received the worst news of all," says former classmate and campus flatmate Guy Yamen, now in New York, "it took no more than 72 hours of internal soul-searching for him to resolve that he would fight it and not give in. I understood from his actions how steadfast and determined he was not to give up."

Parallel to his busy studies, Kremer mobilized all his strength and his friends at Harvard University to find a cure.

"Anyone who sees him becomes involved," Yamen says. "Students and lecturers from the business school alone raised half a million dollars. One of the first things he did was bring the world's largest pharmaceutical companies to a special panel. We asked them what needs to happen for them to invest money in finding a cure, and they responded that the disease has too many unknowns. If they had a few mileposts to guide them, they would become heavily involved."

Because the number of individuals suffering from ALS is small relative to other diseases, both government and industrial research budgets allocated for ALS are not channeled to conduct relevant studies. Kremer gathered the data and dealt with the task of seeking a cure for ALS, with the same sobriety and objectivity he applied to the business cases he had analyzed during his MBA studies. That is how Prize4Life, a U.S. nonprofit organization, was established last year. Prize4Life offers financial awards for anyone who uncovers specific milestones for answering the many medical questions surrounding the disease.

Kremer, who now lives in Boston and runs the Prize4Life organization with the help of university graduates from several countries, conducts business from his motorized wheelchair. The wheelchair is equipped with an electronic card that is read by the university's elevator, which takes him directly to his office on the fourth floor. His campus apartment is roomy, with clear passageways and emergency sensors.

"The most important items for me are the computer and the optical mouse," he says. The mouse comes in the form of a silvery strip attached to his forehead that transmits instructions to the computer. He also uses a computer program that is adapting itself to him, and presents words he commonly uses when prompted with a single letter. He only needs a light tap from his finger-tip to select the intended word.

"Despite all his disabilities, he manages to do more by e-mail than any healthy person I know," says Yamen. "The motivation he exudes in his surroundings causes things to happen quickly." In June of this year, Kremer was honored by the American ALS Association for his tireless efforts.

During our conversation ,Kremer is aided by a table of Hebrew letters placed in front of his eyes. "I look at the first letter of each word - that makes it easier for me to pronounce it," he explains slowly.

What is the hardest aspect of the disease you have to deal with?

"Losing the capacity to communicate is the main difficulty," he responds in a halting manner, with heavy pants preceding every word. "Being dependent on a caregiver is also hard. I try, and usually succeed, to ignore the big questions such as why me and why now, will I still be here in a year or two. I try to focus on day-to-day activity. So the difficulties that keep me occupied are more physical in nature - how to get to the next meeting, will I be able to express myself clearly during the day."

With all your intensive efforts to find a cure for the disease, when do you rest?

"Because I work mainly with the U.S.," responds Kremer, who is in Israel during the summer months, "given the time difference, I usually go to sleep at three or four in the morning and wake up at noon. In Boston, I prefer to go to sleep only when I am exhausted, to prevent ideas from running round my head."

What is the current status of research into the disease?

"The research is progressing all the time. Every passing day brings us closer to a cure," Kremer pauses and takes a very deep breath before continuing the sentence, "for this accursed disease. New researchers are joining us all the time, and more money is flowing in. But every day also destroys another part of my body. So it is a race against time."

ALS is a degenerative disease, striking the cells responsible for motor activity. The cause of this cell degeneration is unknown. Those suffering from the disease can usually expect to live another five to seven years. In the U.S., 150,000 individuals suffer from ALS at any given time, with 30,000 new cases diagnosed each year. There are between 500 and 700 cases in Israel.

Dr. Vivian Drori, the neurologist who heads the ALS clinic at the Tel Aviv Sourasky Medical Center, explains that the disease is a global phenomenon. "It can strike in industrialized or remote places, at any age, without any relation to anything else."

The initial symptoms are muscle weakness in one area of the body. The weakness slowly spreads to other muscles, eventually leading to total paralysis. "In 6 percent of the cases the disease abruptly stops," says Drori, "with the most famous example of such a patient being Stephen Hawking."

As recently as 10 years ago, very little research was conducted on ALS; it was considered to be an esoteric disease, affecting very few patients. The main engine pushing for more research is the activities of patient associations in Israel and around the world.

"There is a lot of progress, but nothing that can allow us to say that we are close to a cure. Most of the progress concerns understanding the process of cell decay, but the problem is that until we have a deeper understanding of the disease's mechanism, it will be difficult to develop the right medication. But a cure will be found, of that I am certain. The question is when. Will it be in the next decade, or will it take much more time? That depends on the intensity of research conducted, and sometimes also on luck."

IsrALS, the Israeli association for the advancement of ALS research, was founded three years ago and is led by a group of ALS patients. The association recently managed to persuade Hawking to appear in a video clip intended to raise awareness of ALS, as part of a global campaign.

The difference between IsrALS and Prize4Life is in the research focus. "They are seeking solid research results, for which they award prizes, while we accept research proposals and fund them," says Nir Zoran, chairman of IsrALS. "These are different but complementary conceptions."

For more information, see www.israls.org or call 04-8252233.

Prize4Life, founded a year ago, bases its approach on "scientific competition." It encourages researchers to identify cures for the disease in exchange for large sums of money. The nonprofit organization has managed to raise $4.5 million in less than a year.

"We don't necessarily want the money right then and there," says Yamen, "only a commitment on the part of donors to provide the money if and when solutions are found to our challenges." In the coming weeks the organization will begin an Internet campaign called Dollar4Life, in which Web surfers will be asked to donate a dollar to Prize4Life.

For more information, see www.prize4life.org.

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