Meet the Man Who Can’t Walk, Talk or Use His Hands and Yet Runs a Multi-Million Dollar Charity

 

 

Avichai Kremer

The next time you consider taking a sick day, think about this guy. Avichai Kremer was 29-years-old and on top of the world. A native of Israel, he’d been accepted to Harvard Business School and was just beginning his studies within those ivy walls when the devastating news arrived.

After feeling numbness in his fingers, which made holding a coffee mug difficult, he was diagnosed with ALS – Amyotrophic Lateral Sclerosis — commonly known as Lou Gehrig’s disease, a degenerative condition in which muscles gradually atrophy, ultimately leading to complete paralysis. After nine years with the disease, Kremer is unable to move his arms, legs, or to speak. But his brain functions perfectly as does his brilliant mind, which he decided to put to very good use.

When he received the terrible news, Kremer retreated to bed depressed for several days, but upon arising, he decided he had to take action, both for himself and for the hundreds of thousands with his condition. He recruited friends from Israel, his Harvard classmates and professors who together founded the American non-profit Prize4Life.

Of course, as business school students, they had to put a capitalist twist on the project (which is ironic considering Chinese communist revolutionary leader Mao Zedong is believed to have had ALS!). Kremer and crew constructed a business plan, bringing their financial acumen and innovative spirit to the project focused on how to find a cure that’s evaded scientist for 140 years.

Kremer tells TheBlaze:

I was a young student at Harvard Business School then and the world was my oyster. To receive the diagnosis of a disease which is 100% fatal within 3-5 years on average, was incomprehensible. For a few days I simply couldn’t get out of bed. But I knew it was also an opportunity; an opportunity to use my business skills – and the skills of my HBS classmates – to make a difference. An opportunity to change ALS. An opportunity to show that hope is stronger than fear.

Early on, Kremer and his colleagues realized they needed to redefine the game. They knew that great breakthroughs come from unexpected places. But how to lure the top minds to research ALS? While other medical charities offer grants for ongoing research that may or may not succeed, Prize4Life believed a radically new approach was needed. As students of history, they realized offering inducement prizes that reward only successful results was the way to go. Kremer explains:

Inducement prizes worked for centuries to incentivize people — they attract attention to a problem and define what is needed to solve it. Furthermore, looking from the donors’ perspective, prizes are very appealing — you only pay for results!

Last year, they granted their first million-dollar prize that rewarded the scientist who developed a biomarker that tracks the progression of the disease cheaply and accurately. This means clinical trials will be less expensive and more efficient. This year, Prize4Life launched its second offer: one million dollars to whoever can develop a treatment to prolong survival in mice by 25%.
Prizes have driven innovation for a century. Most famously, the Orteig Prize encouraged Charles Lindbergh to be the first aviator to cross the Atlantic. Kremer says [emphasis added]:

I view Prize4Life as a start–up and myself as an entrepreneur. Entrepreneurship is about seeing an opportunity and seizing it. And we use our prize model to create markets and action, where there was none or little before. We are using our prizes strategically to lower the barriers to entry. We are helping find drug leads, making clinical trials more efficient. We want people to do good – we want this disease cured – but we also understand it’s a business and want people and companies to win, financially, for doing so. We don’t ask for any rights in any inventions that are made — we want the inventors to keep their full motivation to get to a real, viable product and make money.
While the goal of entrepreneurship is to capture value, usually monetary. For a man facing death, money is insignificant. Shakespeare knew it when his Richard the 3rd said: “my kingdom for a horse!” Hope is my currency of value. A purpose is another. Purpose to still make a difference even if there’s a chance you won’t be around to enjoy it. I get both from Prize4Life. Would I have done it if I wasn’t a patient myself? Probably not, unless someone close to me was a patient. Money is a powerful incentive, and a very convenient one being able to trade it for almost anything, but it can’t be traded for everything (like an ALS cure) and in those cases, a higher from of value capturing kicks in.

Kremer operates a censor between his eyes to type on virtual keyboard. A screen for guests communicates his words.

 

TheBlaze visited Kremer in his Haifa home, where he painstakingly communicates using his facial muscles to move a sensor between his eyes to type each letter on a virtual keyboard on the screen in front of him. What he lacks in motor abilities, he makes up for in mental acuity, creativity and optimism. He told Israel’s Channel 2 News: “Today is wonderful because I woke up alive. All the rest is a bonus.” [Hebrew link]

Kremer and his team have successfully raised $10 million over the past six years. We asked him to describe the challenge of running the organization across the globe headquartered in Boston in light of his physical limitations. Kremer says:

Doing everything is harder with my physical limitations. As you can see I can’t speak or move my hands anymore and I communicate by slowly typing with a sensor attached to my forehead and I need to move it for every letter. I cannot walk and am being fed through a tube to my stomach. Soon, as my breathing muscles weaken, I’ll need the help of a breathing machine. Still, my brain remains intact and with the assistance of modern technology I manage to run the organization. For every motor function that I lack I compensate with extra dedication, extra persistence, extra creativity, because I am working to save my life and the lives of the people who are being diagnosed today … who are going to get it next year. The disease is relentless and will keep coming, and will keep killing us, and we must be relentless too if we want to beat it. I am not going to leave any stone unturned.

That dedication is being recognized in high places. Kremer won the Dean’s Award at his Harvard graduation. His main goal then was to walk with his own feet to accept his diploma, which he did, to a standing ovation from his classmates.

Avi Kremer accepts M.B.A. and Dean’s Award from Harvard Business School, June 2006 (Screen shot from: Israel Channel 2)

Others are taking notice. Israeli President Shimon Peres said of Kremer: “Although people sometimes receive an extremely harsh sentence, the only option that we have is not to surrender.” And last year, Kremer received the prime minister’s prize for innovation from Benjamin Netanyahu.

Avi Kremer receiving award from Israeli Prime Minister Benjamin Netanyahu last year (Screen shot from: Israel Channel 2)

At the ceremony, his mother Hedva read the speech Kremer wrote, in which he said:

Regrettably, I can no longer speak. But I will not let my illness take away my voice. Leonard Bernstein once said, “In order to achieve great things, two things are required – a good plan and not enough time.”

“It’s about creating change,” colleague Neta Zach, who is the scientific director for Prize4Life Israel says. “To be around Avi is extremely inspirational.”
Kremer says the most important thing he wants people to know is, “We are racing against time to save hundreds of thousands of lives, and everyone can help.”
For more information on Prize4Life and ALS, visit their website.


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