Here and Now with Robin Young and Jeremy Hobson
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.

Experts share a range of perspectives on how to combat the Islamic State militant group, and the role the U.S. should play.

Robin and Jeremy

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

November 26 8 Comments

Arlo Guthrie Celebrates 50 Years Of ‘Alice’s Restaurant’

Listening to the 18-minute musical monologue has been a Thanksgiving tradition among folk music fans for decades.

November 26 Comment

One Refugee’s Story Of Coming To America

Paul Okot vividly remembers landing at JFK airport in New York at 7 years old, after fleeing violence in southern Sudan.

November 25 3 Comments

Rapper Le1f Finds Struggle And Moral Diversity In American Music

We've been asking musicians what they think of when they think "American music." Today we hear from Khalif Diouf, aka Le1f.

November 24 7 Comments

Ferguson: One Year Later

City council member Wesley Bell looks back on the past year since protests and violence swept the Missouri city.