The Ice Bucket Challenge Just Funded the Discovery of a New ALS Gene

If you spent any amount of time online in the summer of 2014, you were probably swept away in a flood of “ice bucket challenge” videos – a viral stunt meant to help raise funds to fight amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease.

The challenge involved people donating money to fund ALS research or dump a bucket of ice water on their heads (sometimes both), and then challenge friends and family to participate as well. Public figures including George W. Bush, Mark Zuckerberg, Shakira, Bill Gates, Oprah, Barack Obama and many more got swept up in the trend, leading a number of critics to decry the entire challenge as nothing more than “slacktivism” —  a goodwill gesture that allows the participant to feel better about the world without having to actually make a difference.

However, the challenge proved to be a massive success, despite the naysayers. Within a month, the challenge managed to raise over $115 million for the ALS Association to invest in research aimed at fighting this debilitating and fatal illness. The funds collected were immediately invested into a number of different initiatives related to ALS, breaking down as such:

  • $77 million (67%) went to research.
  • $23 million (20%) went to patient and community services.
  • $10 million (9%) went to public and professional education.
  • $3 million (2%) went to fund-raising.
  • And $2 million (about 2%) went to payment processing fees.

Now, two years later, scientists have announced that those funds were used to discover a previously unknown gene related to the disease. Called NEK1, the gene is associated with only 3% of ALS cases, but could be used to help develop therapies that might be helpful for anyone with one of the 30 total genes that contribute to the disorder.

The finding is the result of Project MinE, one of about 150 research projects to receive money through the fundraiser. $1 million of the funds were used in this project, which involves 80 researchers from 11 different countries who aim to sequence ALS genes.

This isn’t the first time ice bucket funds have resulted in an ALS research breakthrough – last year, a team from Johns Hopkins Medical were able to use some of the money to investigate TDP-43, a protein that malfunctions in ALS patients and makes it hard for the body to properly decode DNA. The study found that similar proteins might be able to be used to restore function to affected cells.

These are only two out of over a hundred research projects currently looking into the mechanisms behind the disease and exploring potential treatment options. It’s exciting to imagine how many other breakthroughs may still be in development – in the coming years, we’ll hopefully begin seeing real headway made to fight this awful disease.

In the meantime, this new breakthrough is a powerful reminder that the internet isn’t just a tool for posting pictures of your lunch or chatting with your friends. It can also be used to advance important issues, raise money for deserving causes, and make a real difference in the world.

Photo Credit: Thinkstock


Past Member
Past Member 12 days ago

I was diagnosed with ALS (amyotrophic lateral sclerosis) 15 months ago. At that time riluzole was prescribed. I found I could not tolerate it. did very little to help me. The medical team did even less. My decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of my primary physician, I would have died. There has been little if any progress in finding a cure or reliable treatment. My ALS got significantly worse and unbearable because of my difficulty catching breath. Last year, i started on a natural ALS Herbal therapy from Green House Herbal Clinic, i read a lot of positive reviews from patients who used the treatment and i immediately started on it. I had great relief with this herbal treatment. I am doing very much better now, no case of shortness of breath or difficulty swallowing,, my ALS condition is totally reversed. Visit Green House Herbal Clinic website ww w.greenhouseherbalclinic .com. This treatment is a miracle!!

Julianne R
Julianne R8 months ago

I was diagnosed of ALS (amyotrophic lateral sclerosis) in summer of 2012, my symptoms started out with a "foot drop" on my left foot, from there my left leg lost all muscle tone followed by slurred speech and inability to eat without getting choked, strangled, and coughing. My neurologist prescribed me some medications to help my symptoms but the medications did no good and their side effects were too severe. In 2015 i started on NewLife Herbal Clinic ALS Herbal formula treatment, i read alot of positive reviews on their success rate with the ALS Herbal treatment and i immediately started on the treatment. Just 11 weeks into the ALS Herbal formula treatment I had great improvements with my coordination, speech, breathing and muscle movements. I have basically gone stronger than i'd thought i could ever be again, visit NewLife Herbal Clinic official website or email The fatigue and general muscle weakness had also declined, this treatment is nothing less of a miracle!

Julianne Regan

John B
John B9 months ago

Thanks for sharing the info.

Beryl L
Beryl Labout a year ago

thank you for the article.

Siyus Copetallus
Siyus Copetallus1 years ago

Thank you for sharing.

Marie W.
Marie W1 years ago

So wasn't all wet.

william Miller
william Miller1 years ago


JoAnn Paris
JoAnn Paris1 years ago

Thank you for this very interesting article.

Vivianne Mosca-Clark

more ads then people.......what is going on here?

Glennis Whitney
Glennis W1 years ago

Just so wonderful Thank you for caring and sharing.