But Eric Valor's message grows stronger as a progressive disease lays waste to his body while he organizes a new way to develop lifesaving drugs.
From his bed in
"I am frustrated by both the pace and method of research," he writes.
The computer suspended above his bed is headquarters for
Immobilized, he has become a "biotech guerrilla" who searches databases for new compounds, fundraises, designs study protocols and sets up research to speed pharmacological innovation. And while the odds are long that one desperately ill man can change a world of research protocols, others are taking note.
"His intellect and willingness to contribute to the fight should be an inspiration to all scientists to find a therapy for ALS and all neurodegenerative diseases," said professor
His diagnosis at age 36 with ALS stunned Valor, a handsome athlete and husband who surfed in
More bad news followed: There's no known cause. Or cure. What he learned about the traditional pharmacological industry did not inspire hope. Fewer than 10 percent of all potential medicines are effective and safe enough to make it to market. Discovering, developing, testing and delivering a new drug takes 10 to 15 years and costs, on average,
Now 45, Valor doesn't have that kind of time. Or money.
So he studied neurobiology, taking online classes from
Moving his right eye to control his computer, he used social media to build a coalition of other open-science activists who work in amateur labs such as BioCurious, Berkeley Biolabs, and
Then he founded
The open approach, writes Valor, "allows people with ideas to bootstrap investigations and complete them doing professional-quality research at a tenth of the cost of traditional research institutions.
"The failure rate might be high, but the barrier to entry for innovation is quite low. So it will allow for novel ideas to be tried against problems which have seemed insurmountable -- i.e. 'unprofitable' -- for a long time."
Data, he says, is not a profit-generating commodity; it is a "shared commons in which ideas can flourish."
He continues: "We want to create a situation where anyone with an idea can test or develop that idea in their garage."
Valor -- who can't walk, speak, eat or even breathe on his own -- created the company's domain, its email and website, set up its infrastructure and submitted regulatory paperwork, relying on his family only to physically help open bank accounts.
"Utilizing cloud infrastructure, we can communicate, plan and execute activities just like any other traditional company," he writes. When specific expertise is needed, "I have a wide and growing network of recognized experts with whom I consult."
His SciOpen group's cloud-based sharing of knowledge challenges the costly brick-and-mortar pharmaceutical industry that must protect its discoveries and its profits.
The industry defends its traditional approach, saying it ensures drug safety, efficacy and protection of intellectual property.
"Companies have to recoup their investment in such research," said
"You can't discover medicines at a snap of a finger -- it takes a long time because of the challenges and complexities involved," and the failure rate in clinical trials is quite high, she said. The success of patient advocacy groups in the
In Valor's bedroom, the tableau seems helpless and coldly clinical. But online, he is adroitly concluding a
"He clearly understands the science behind drug discovery research and the conceptual hang-ups that have prevented big pharmaceutical companies from developing any effective treatment for diseases like ALS, AD and Huntington's," said Schubert.
Valor has already outlived the normal three-to-five-year prognosis for ALS patients, and he nurtures long-term dreams.
He also hopes to fund stem cell research that would watch how neurons respond to stressful or toxic situations.
"Everything I had built, bought, saved or enjoyed in my life was taken from me or consumed by this disease," he says, using his eyes to type an answer to a question. "I refuse to go away, however."
"My personal motivation is obviously to save myself," he says. "However, while I am trying to do that, I can at the very least contribute to the pool of knowledge about this disease."
Eric Valor's presentation to the Open Science Summit can be seen on YouTube at bit.ly/1iXM06M. Valor's life and work is reviewed at www.friends4eric.org/ and the
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