90.9 WBUR - Boston's NPR news station
Top Stories:
PLEDGE NOW
Here and Now with Robin Young
Public radio's live
midday news program
With sponsorship from
Mathworks - Accelerating the pace of engineering and science
Accelerating the pace
of engineering and science
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.


Please follow our community rules when engaging in comment discussion on this site.
Robin and Jeremy

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

October 30 2 Comments

How Athletes Are Getting ‘Faster, Higher, Stronger’

Mark McClusky says for elite athletes today, pushing boundaries and breaking records is all about "the aggregation of marginal gains."

October 30 12 Comments

A Computer Model Forecasts Ebola’s Future Path

With the virus in Africa, the U.S. and Europe, experts have created a computer model to predict where it could go next.

October 29 Comment

Reporter Crosses Into Syria To Tell Stories Of Fighters

Holly Williams of CBS discusses some of the people she's interviewed, including women soldiers on the frontlines.

October 29 9 Comments

How Far Have We Come Since The Financial Crisis?

Or are we already going backwards? We ask Michael Lewis, author of books including "Flash Boys" and "Liar's Poker."