[Ip-health] A B-school graduate turns his disease into a business plan -- one that he hopes could literally save his life

[James Packard Love]

* Kremer, diagnosed with [ALS] just months after enrolling in Harvard
Business School . . . started a scientific competition called
Prize4Life , modeled on the X PRIZE , which rewards adventurers if
they complete a certain challenge.

*  In less than a year, Kremer has generated $4.5 million in
contributions.

* 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.

* 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."


http://www.boston.com/news/globe/health_science/articles/2007/05/28/
the_business_of_survival?mode=PF

The Boston Globe
The business of survival
A B-school graduate turns his disease into a business plan -- one
that he hopes could literally save his life

By Stephen Smith, Globe Staff  |  May 28, 2007

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 stsmith@globe.com.


----------------------------------------------
James Packard Love
Knowledge Ecology International
mailto:james.love@keionline.org
tel. +1.202.332.2670 / U.S. mobile+1.202.361.3040, Geneva mobile
+41.76.413.6584

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