By Jessica Still on August 23, 2016
Following the end of the outrageously successful ALS Ice Bucket Challenge, researchers have been making considerable strides in the battle against ALS. You may remember the Ice Bucket Challenge as the summer when 17 million people dumped a bucket of ice water over their head online, but those affected by ALS remember it as the moment that over $115 million was donated to continue the fight against the progressive disease. In the two years since, considerable progress has already been made.
The Reality of ALS
Also known as Lou Gehrig’s disease, ALS causes a gradual deterioration of the motor neurons connecting the brain and spine. As these connections decay, the brain gradually loses all muscular control, robbing a person of their ability to speak, eat, and move. For most patients, the prognosis is only three or four years before they can no longer breathe independently. The grim reality of ALS is a gradual death sentence for which there is currently no cure.
Advancements in ALS Research
The most recent discovery in the battle against ALS is the so-called NEK1 gene, which is now one of nearly 30 genes known to be associated with ALS. Its relationship to ALS was discovered thanks to an Ice Bucket Challenge grant provided to researchers at the University of Massachusetts Medical School, enabling them to lead a global gene sequencing project spanning 11 nations and nearly 100 researchers.
Knowledge of the NEK1 gene will provide those involved in the fight against ALS with a better understanding of the disease. It may not necessarily mean an immediate impact for those who suffer from ALS today, but in the long term, NEK1 may provide new avenues of exploration for the development of a treatment or cure.
The Legacy of ALS Research
The NEK1 gene is actually the third ALS-related gene discovered in the time since the Ice Bucket Challenge concluded two years ago. And while many of these findings are ALS breakthroughs in their own way, it’s important to understand that scientific progress is fundamentally incremental. It’s the accumulation of these smaller findings that ultimately lay the groundwork for the next big development, whether it’s a cure through a new form of gene therapy, a method yet unknown.
Some critics have been quick to warn that campaigns like the Ice Bucket Challenge may act as a double-edged sword for scientific progress. And this may be true — the Ice Bucket Challenge and those who reported on it probably helped influence public perception towards the incorrect belief that funding science means almost overnight breakthroughs, or that medical research can thrive on philanthropy alone. However, it also may be true that viral phenomena like the Ice Bucket Challenge can help raise awareness and funds on the steady march towards finding a cure.
It’s true that science can deliver breakthroughs and treatments for diseases once thought to be incurable, but those miraculous developments are the result of incremental progress that can only occur with large scale sustained funding. Individuals who want to make a difference in the battle against disease may be discouraged by that thought, but they shouldn’t be. Millions of ice-water soaked participants have already proven that with a worthy cause, the average person can change the world, even in the battle against a debilitating disease like ALS.