Aug 29, 2014 at 04:53 PM

Ice Bucket Challenge Expedites ALS TDI Drug Trial

By Jos Cofio

This article republished from boston.cbslocal.com

ALS Ice Bucket Challenge responsible for expediting timeline of a clinical drug trial

The CEO of a Massachusetts ALS research organization said donations from the Ice Bucket Challenge are responsible for expediting the timeline of a clinical drug trial by two years.

Dr. Steve Perrin - TDI
Dr.Steve Perrin, PhD

Dr. Steve Perrin, the CEO and chief scientific officer of ALS Therapy Development Institute (ALS-TDI) in Cambridge, said the organization will invest $1.5 million to partner with another company, aiming to have their drug in clinical trials by early 2015.
Perrin said ALS TDI was able to move the timeline up by two years because of the $3 million it raised through the ALS Ice Bucket Challenge.
“The Ice Bucket Challenge has just been an amazing campaign started by a couple ALS patients who obviously had no idea it was going to go viral. And yet it’s changed the ALS landscape forever,” said Perrin in an interview with WBZ NewsRadio 1030’s Anthony Silva.

Boston College baseball player Pete Frates helped Ice Bucket Challenge Phenomenon

Former Boston College baseball player Pete Frates helped the Ice Bucket Challenge go viral earlier this summer, using the social media fundraising campaign to spread awareness for the disease also known as Lou Gehrig’s Disease. As of Wednesday, the ALS Association reported that it received $94.3 million between July 29 and August 27 compared to $2.7 million during the same time frame last year.

Pete Frates - ALS Ice Bucket Challenge
Pete Frates at Fenway Park

“ALS historically being an orphan disease, most people didn’t even know what it was, had never heard of it,” said Frates, who said an orphan disease means less than 200,000 people are diagnosed with the disease at any given time.
“Now it’s a household name that everybody has an affinity to because so many people have done the Ice Bucket Challenge.”

ALS TDI is a non-profit organization that includes 36 full-time scientists

ALS Therapy Development Institute

Located in Cambridge, ALS TDI is a non-profit organization founded in 1999 that includes 54 employees and 36 full-time scientists. ALS TDI started in the basement of a Newton family whose son had been diagnosed with ALS, and grew into the largest research institute for the disease.
Perrin said he can’t talk specifically about the drug that he anticipates will be given to ALS patients by early next year, but added that he hopes to reveal more information in the upcoming weeks.

Ice Bucket Challenge Unique Worldwide Phenomenon

The Ice Bucket Challenge has found success worldwide, something Perrin said he has never seen in his career.
“I can’t think of another example. This is unique. It’s never happened. I’m sure there will be a Harvard Business case study about it,” said Perrin.
“It’s actually amazing what’s happened here. And again it all tracks back to a couple of families who had an amazing idea, and the world got behind it. And we’re very excited about that.”


WBZ NewsRadio 1030’s Anthony Silva reports

Posted in Friends of Beyond ALS.