From Lady Gaga to George Bush, millions of ALS "Ice Bucket Challenge" videos cascaded across Facebook Newsfeeds all summer. But while everyone’s attention was turned towards the digital world, groundbreaking research regarding ALS was discovered right in our backyard.
The Les Turner ALS Research Laboratory of Feinberg School of Medicine released a document on Sunday, detailing the development of a new mouse model that helps visualize the degradation of the neurodegenerative disease. Led by Dr. Teepu Siddique, the lab improved upon the previous mouse model that was made available worldwide in 1994. Siddique noted that the earlier version lacked a component for the behavioral model of the disease.
“Quite a few patients’ behavior changes, and there was really no way to study this phenomenon,” Siddique said. ”So, this mouse is so valuable. The exciting part is that it reproduces pathologically, physiologically and it also has behavioral changes that are remnant of the disease.”
According to Siddique, the new model is reproducible and will enhance their research on ALS.
“Right now, there are no good models for neurodegeneration, but these stand out in terms of fidelity and ALS,” Siddique said. “We are ahead of Parkinson’s and other diseases as well. It’s a verifiable way of testing drugs that will work.”
Siddique and his lab have been leading ALS researchers since their major breakthrough in 2011 when they identified the protein, ubiquilin 2, as the common cause for various forms of ALS. But regardless of how many videos were posted to Facebook or other social media sites, Siddique notes how Northwestern Medicine has “yet to see any funds from the ice bucket challenge.”
“It goes a long way, but we are not the recipient of that money,” Siddique said. “So, we’re in the same situation as before the challenge.”
A major recipient of the donations from the viral video campaign, the ALS Association reported on August 27 that they received $94.3 million in donations since July 29, around 35 times more than the amount they collected in the same duration last year.
“We could have changed the entire landscape of the disease with that depth of money,” Siddique said. “We know what to do. We know what the pathology is, and we have good animal models. All of that is in the pipelines ready to go, but I wish we had more efficient resources to make it go faster.”
Although Northwestern research didn’t receive the funds raised by the “Ice Bucket Challenge,” Siddique notes that the challenge itself is a “good thing” and hopes it will contribute to the awareness of ALS as a fatal disease.
“There is no treatment that reverses it or slows it down in a meaningful way. But anything that is done is positive. And we commend NU students for participating in social welfare activities.” As awareness for ALS continues to go viral on social media, Siddique wishes to advance his research so that he and other researchers have a better understanding of neurodegenerative diseases, especially ALS.
“When I was a resident and a fellow, you could diagnose victims of ALS, but we were clueless as to what caused it,” Siddique said. “It was heartbreaking to see patients fade away and become completely helpless. But it was a huge motivator for me to try and do something that would change the field. And I’m glad to report that it has.”