Follow this link for an incredible infographic!
http://www.alsa.org/news/public-awareness/als-awareness-month/2016/what-is-als.html
However, powerful takeaways of the linked infographic includes that there is no cure for ALS, there are only three drugs available for those with ALS, life expectancy after diagnosis is 2-5 years, and 90% of the cases occur without family history.
Amyotrophic lateral sclerosis emerged into the spotlight when baseball legend Lou Gehrig was diagnosed after a significant baseball slump (at the hand of his disease unbeknownst to him). He had the record for the highest number of consecutive games (2,130) until it ended when he voluntarily took himself out of the line-up because of his failing performance in the game. He passed away two short years later, and thus amyotrophic lateral sclerosis became known as Lou Gehrig’s disease.
In 2014, there was the wildly popular “Ice Bucket Challenge,” where people would challenge their friends to dump a bucket of ice over their heads and result in a donation to ALS research.
This challenge rose over $115 million dollars for ALS. This was a huge success in terms of the amount of money raised as well as the raised awareness by society.
Those funds helped finance research that eventually led to the discovery of a new gene associated with ALS, thereby emphasizing the importance of funding and supporting research.
Unfortunately, ALS remains extremely elusive. It is essentially diagnosed by ruling every other possibility out, and treatments consist of making the individual comfortable.
One of the most prominent figures of ALS is the recently deceased astrophysicist Stephen Hawking. He was diagnosed when he was 21 years old and was given the prediction of two years to live. He lived until he was 76.
The creator of Spongebob Stephen Hillenburg passed away in November 2018 due to complications with ALS at the age of 57. His work impacted the lives of millions of children around the world with Spongebob.
All these public figures and internet challenges seek to bring awareness and help lead efforts to fundraise for ALS. Although at the moment, there is not a lot known about ALS, which can provoke fear. We must leave room for hope. We must harness the unknown and use that energy to push forward to yield more information. It is unlikely there will be a cure for ALS in the near future, but research is rewarded by knowledge which can be applied to impact many lives, whether it is a possible treatment or simply that a different treatment will not work. We as a society must funnel resources to the pursuit of information with confidence that there will be help.
Sources:
The Day Lou Gehrig Took Himself Out of the Lineup
http://www.alsa.org/about-us/ice-bucket-challenge-faq.html
http://www.alsa.org/news/public-awareness/als-awareness-month/2016/what-is-als.html
