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UMMS-led discovery of ALS gene funded by Ice Bucket Challenge; nets global attention

By Sandra Gray and Bryan Goodchild

UMass Medical School Communications

July 27, 2016

The discovery of an ALS gene by UMass Medical School scientist John Landers, PhD, and a large, international research team, funded by the viral Ice Bucket Challenge campaign, is garnering headlines around the globe.

“Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery,” said Dr. Landers, professor of neurology, in a July 27 Washington Post article, “The ALS ‘Ice Bucket Challenge’ is working.” “It is a prime example of the success that can come from the combined efforts of so many people, all dedicated to finding the causes of ALS. This kind of collaborative study is, more and more, where the field is headed.”

The research led by Landers and Jan Veldink, PhD, at University Medical Center Utrecht in the Netherlands, was supported by The ALS Association through Project MinE, an international collaboration for gene discovery in ALS.

Made possible with funds raised by the 2014 Ice Bucket Challenge social media campaign, the $1 million grant from the ALS Association allowed Landers to bring an international effort to identify all the genes that cause both familial and sporadic ALS.

The team found variations in NEK1, a gene with multiple functions in neurons, present in approximately 3 percent of all cases of both sporadic and familial ALS in North America and Europe, making it one of the most common genetic causes of the disease. The findings were published in Nature Geneticson July 25, marking the two-year anniversary of the Ice Bucket Challenge, in which many members of the UMass Medical School and UMass Memorial Health Care community participated.

Extensive news coverage of the discovery is validating the success of the Ice Bucket research funding phenomenon. Examples include:
CNN Ice Bucket Challenge's 2nd anniversary celebrates its gene discovery
WBZ-TV4 Boston Ice Bucket Challenge Donations Helped Fund New ALS Gene Discovery
New York Times ALS-Related Gene Found With Help From Ice Bucket Challenge
New York Daily News Ice Bucket Challenge funds help scientists discover gene responsible for ALS
United Press International ALS non-profit: Ice bucket challenge funded gene identification
The Today Show Ice Bucket Challenge helped lead to potential ALS breakthrough
ABC News Ice Bucket Challenge funds contribute to discovery of gene linked to ALS
BBC The Ice Bucket Challenges that may have changed the medical world
The Guardian Remember the ice bucket challenge? It just funded an ALS breakthrough
The Washington Post The ALS ‘Ice Bucket Challenge’ is working
Worcester Business Journal
UMass finds ALS gene using Ice Bucket challenge funds

Related stories on UMassMedNow:
New gene variants present in 3 percent of all ALS patients
Ice Bucket Challenge paying for genome sequencing in ALS patients
Substantial progress being made in ALS research at UMMS
UMMS ‘at the forefront’ in ALS research, reports Telegram, NECN
New ALS-associated gene identified using innovative strategy
Researchers isolate gene mutations in some ALS patients