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Tuesday, September 11, 2012

Update: ALS Patients Brew Up Their Own Treatments

45-year-old Ben Harris was diagnosed with ALS last year, and now is taking part in a DIY trial. (Courtesy: Ben Harris)

45-year-old Ben Harris was diagnosed with ALS in 2011, and now is taking part in a DIY trial. (Courtesy: Ben Harris)

Back in May, we spoke to 45-year-old Ben Harris, who suffers from ALS, or Lou Gehrig’s disease.

The disease  robs people of the ability to move, speak and eventually breathe on their own. Most patients die within two  to five years of their diagnosis.

Ben is one of a number of patients who are trying to come up with their own cure because they’re frustrated with the five- to seven-year long FDA drug approval process.

The group uncovered the key ingredient in a trial drug and started taking it themselves.

Ben emailed us recently to tell us that his brother, Jason, is working on a documentary about the do-it-yourself drug trial movement.

“It is about patients with a serious disease pushing aside the FDA and the pharmaceutical companies and taking over the drug trial process by running their own experiments on themselves by themselves,” Ben said.

Jason Harris is raising money for the film on the fundraising website Kickstarter.

Ben believes that the DIY community of patients is his best hope for a cure.


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Robin Young and Jeremy Hobson host Here & Now, a live two-hour production of NPR and WBUR Boston.

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