Remember the ice bucket challenge several years back?
Did you do it?
Did your friends do it?
Millions of people participated and took on the challenge of dumping a big bucket of ice water over themselves on social media while tagging and challenging multiple friends and family members to do the same. What was the point? To raise awareness for amyotrophic lateral sclerosis or ALS. Millions of people participated and millions of dollars were raised, so it sounds like it was a success. However, if you ask people who knew about the challenge or even those who participated in it, most of them are unable to tell you what is was for or why they did it. I would like to clear that up.
May is ALS awareness month. ALS is a progressive disease that slowly paralyzes every part of the body while mental abilities and awareness stay intact. A person who suffers from ALS loses their ability to walk, talk, swallow, breath while being completely aware and unable to do anything about it. It typically progresses slowly over the course of 3-5 years although there is great variation in the length of that timeline. There is no cure.
It is important for researchers to continue to search for potential treatments and hopefully one day we will find a cure. In the meantime, we need to continue to improve technology to help those with ALS and other paralyzing conditions live more fulfilling and enjoyable lives. Communication devices and computers that are controlled by a person’s eye movements allow those who cannot move anything but their eyes a way to interact with their environment. Motorized chairs with specialty functions and developments in home automation technology support more productive lives. Voice banking creates personalized voice data to mimic a person’s natural voice that will allow them to communicate verbally after losing their ability to talk.
Steve Gleason, former New Orleans Saints player, was diagnosed with ALS in 2011, a diagnosis that typically comes with a 3-5 year prognosis. He started Team Gleason, an organization that works to improve the lives of those with ALS by providing assistive technology. To date, they have provided over $15 million worth of such technology in an effort to create more purposeful and productive lives. Now, over a decade later, Steve continues to strive to “inspire people” and “motivate the world.”
“Until there is a cure, technology is the answer” a quote attributed to Steve on Team Gleason’s website, “Donate today to give others like me a voice.” Indeed, making even a small donation will help those who need it most in big ways. I hope awareness of this disease continues to grow and we strive towards improving lives and aiming for a cure. To learn more about the work that Team Gleason does, visit their website at https://teamgleason.org.