One year on: What the ALS Ice Bucket Challenge has achieved

By Kate Hassett

One year on: What the ALS Ice Bucket Challenge has achieved
Has the money raised by the viral campaign actually made a huge difference?

Everyone remembers the Ice Bucket Challenge. A viral online campaign that called for participants to dump buckets of icy water all over themselves – in the name of science.

The aim in fact, was to raise awareness and much needed funding for the ALS foundation.

Although some members of the public were reluctant to accept the challenge, labelling it as a frivolous act of “slacktivism”, it turns out that cold water really had an effect on people.

All together, the initiative managed to raise over $100 million, which was a far cry from the $2.8 million that the organisation had raised in the year prior.

The disorder that affects the functionality of nerves and muscles, is often considered a brutal disorder- with just 20% of sufferers living for more than five years after diagnosis.

However, there may be hope for sufferers of the disorder, as the money raised has gone towards research that has made a major breakthrough.

Dr. Jonathan Ling, an ALS researcher, recently completed a Reddit “Ask Me Anything” where he revealed what the fundraising had achieved thus far.

Ling’s research has been able to identify a protein in cells that can be linked to ALS.

The protein, called TDP-43, is important for decrypting messages that allow our bodies to function.

“DNA is located in the nucleus of a cell. You can think of a nucleus as a library except that instead of having books neatly lined up on shelves, the books in a nucleus have all of their pages ripped out and thrown around randomly.

To sort through this mess, the cell has great librarians that go around collecting all these pages, collating them and neatly binding them together as books. These librarians then ship these ‘books’ out of the nucleus so that other workers in the cell can do their jobs. Think of these books as instruction manuals.

TDP-43 is a very special type of librarian. TDP-43’s job is to ensure that nucleus librarians don’t accidentally make a mistake and put a random nonsense page (usually filled with gibberish) into the books that they ship out. If one of these nonsense pages makes it into an ‘instruction manual,’ the workers in the cell get really confused and mess things up. For terminology, we call these nonsense pages ‘cryptic exons.'”

The research found that in 97% of ALS cases, TDP-43 wasn’t working properly. Meaning that now they know the importance of this protein, and its vital role in how ALS progresses, researches can now focus on new therapies that will replace the dysfunctional protein – with one that actually works.

Dr. Ling and his team are hoping to put these therapies into practice during clinical trials within the next two-to-three years.

Whilst this is not the answer, it is certainly a step in the right direction and a meaningful advancement in ALS research.



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