Avi Kremer's thoughts and words are locked in a constant hare and tortoise race, words unable to keep pace with thoughts.
It is the singular burden of ALS: The mind remains fiercely active, even as the connections from brain to mouth fray. Kremer, diagnosed with the disease just months after enrolling in Harvard Business School , begins a sentence and stops. Then starts again. And stops. Sometimes, when a word proves especially recalcitrant, he shakes his head and smiles.
"I have developed a lot of patience," he said.
Kremer, whose wheelchair sports a Borat the comedian bumpersticker, has not let the disease steal his humor, his determination, his deep desire to be innovative.
So he decided to take what he had learned at Harvard and apply it to a condition that is invariably lethal. His disease became his business plan.
"Avi moved very quickly from the anger stage after diagnosis to a very applied, entrepreneurial stage when he said, 'Let's get on with it. Let's find the solution. Let's put the resources on the table to empower research,' " said Kremer's neurologist, Dr. Robert Brown of Massachusetts General Hospital .
With the help of his business school buddies and luminaries in neurology research, Kremer, now 32, started a scientific competition called Prize4Life , modeled on the X PRIZE , which rewards adventurers if they complete a certain challenge. Neurologists said they have never heard of anything quite like it.
Usually, researchers get grants as seed money on the front end of their scientific pursuits. Prize4Life takes that dogma and turns it inside out. Scientists get the prize money only after solving crucial questions about ALS -- solutions that could hasten discovery of drugs to slow the disease.
But once Kremer and his classmates had the idea for a prize, the next question was how would they raise the money? They came up with the idea of offering potential donors a money-back guarantee: If our scientific contest yields results, that's your dividend. If there's no solution to the riddle, we'll return your donation.
The pitch is working. In less than a year, Kremer has generated $4.5 million in contributions.
A few months back, former Israeli Prime Minister Ehud Barak arranged for Kremer, once a wiry platoon leader in the Israeli Defense Forces , to meet with New England Patriots owner Robert Kraft, who was so moved that he donated $250,000.
"I don't think that they're giving us their money out of pity, because otherwise Robert Kraft could have given us $2,500, not $250,000," Kremer said. "But I do think that the fact that I'm afflicted by ALS, I think they're really convinced of the message that we are going to use the money wisely because my life depends on it."
Rena Clark , vice president of community affairs and corporate philanthropy for the Patriots, has sat through dozens of presentations from worthy causes.
"This was by far the most emotional," she said. "Avi is fighting a pretty valiant fight here."
That fight begins and ends every day in a dormitory suite on the Harvard Business School campus, where Kremer's work as a research associate has allowed him to continue to live since his 2006 graduation.
In his two-room suite, there's a photo of Kremer and his military pals, and another picture frame emblazoned with the message, "The Sky's the Limit -- Class of 2006." There's a phone with big buttons to make it easier to dial and a bathroom with a wide door to accommodate Kremer's motorized wheelchair. A banner in the living room proclaims, "Cure ALS."
Even as his condition deteriorates, Kremer manages to navigate the terrain of the business school campus, using his foot to jab at the buttons that automatically open doors.
Until recently, he traveled across the nation, meeting with anyone who would listen to his story. Now, his campaign is waged largely via computer -- modified so that he can move the mouse by moving his head.
Patients with narratives to tell have changed the course of research in other diseases, from cancer to Parkinson's to spinal cord injuries. Having Kremer as the face of Prize4Life "brings a sense of urgency," said Lorenzo Refolo , who heads ALS programs at the National Institute of Neurological Disorders and Stroke . "It brings a sense of need."
The first sign that something might be wrong with Avi Kremer arrived a few months before he landed in Boston. An odd tremor shook his right forearm. It's probably nothing, Kremer figured. But the twitch persisted as he prepared to leave his hometown of Haifa, the heart of northern Israel.
By the time he started his studies at Harvard, Kremer had begun to suspect something might be seriously wrong. Brown made the diagnosis: amyotrophic lateral sclerosis , a condition afflicting as many as 50,000 Americans.
Not much has changed since baseball legend Lou Gehrig died of ALS in 1941. Most patients still live only three to five years after diagnosis, and only 10 percent, including famed scientist Stephen Hawking , last a decade or more.
Kremer's dresser is testament to that hopelessness. It is freighted with vitamins and supplements, which he trusts will give him strength and sustenance. There's only one medication for ALS, which Kremer takes, but the pill only extends survival by a few months.
It was the frustratingly slow pace of research into ALS that goaded Kremer and his friends into action.
"Traditional fund-raising and donations to traditional nonprofit organizations weren't providing the catalyst for research," said Nate Boaz , a classmate of Kremer's and co-founder of Prize4Life.
Big pharmaceutical companies and even smaller biotechnology firms generally avoid ALS research, because they perceive it as high-risk, said Dr. Nicole Szlezak , a Harvard researcher who is science officer for Prize4Life. "Certain tools that are needed for drug development in any disease are not in place in ALS and that's because ALS is little understood," Szlezak said.
Scientists can't even say for sure why the nerve cells that steer muscles, known as motor neurons, start to die, leading to a relentless weakening of muscles from the limbs to the diaphragm, with patients ultimately dying because they can no longer breathe.
Prize4Life aims to jump-start the field by enlisting scientists the world over. Last November, it released the first of its scientific questions. Researchers are being asked to come up with some way of charting the progression of ALS deep inside the body to more quickly -- and less expensively -- determine whether a drug is making a difference. With AIDS, for instance, drug development sped up once scientists could test patients' blood for pivotal markers of the disease -- instead of waiting for symptoms to progress or fade.
Mass. General's Brown, who sits on the scientific advisory board of Prize4Life, said the unorthodox approach is designed to entice researchers beyond the well-known coterie of neurology specialists.
"The people already doing ALS research aren't going to be able to work any harder. Big pharma is not going to be influenced by a $1 million prize. The unknown is who's on the fringe," Brown said. "Who is out there who would be motivated to apply relevant research to ALS? That's the group this prize will go after."
But Brown said he's "not at all sure this model will work."
"I have definitely heard other esteemed people in the field of ALS research ask about whether this is a diversion of resources and energy that will actually slow progress," he said.
Still, there are encouraging signs. Prize4Life scientists this month selected five winners in the first round of the challenge, giving each $15,000. The deadline for a prize of $1 million is November 2008.
"Some of those entries came from people who had nothing to do with the ALS research community and their interest was entirely sparked by this prize approach," said Adrian J. Ivinson , director of the Harvard Center for Neurodegeneration & Repair and a member of the Prize4Life scientific advisory board. "We didn't know how the scientific community would react. We didn't know if people would turn their nose up at it out of principle."
Next month, Kremer plans to return to Israel. His little sister is giving birth to her first child, Kremer's first nephew. The family will celebrate the arrival of a new generation and all the hope that comes with it.
Yes, he said, he anticipates that while home in Haifa, his father and mother, a dermatologist and a nurse, will plead with him to stay there. They are parents consumed with concern about their oldest child. They have asked him to come back home before.
"But this," he said, his eyes scanning his dormitory room, "is my life."
Stephen Smith can be reached at firstname.lastname@example.org.