(By Team Gleason) - Everyone today laments the effect technology is having on our per- sonal relationships—that we are becoming more and more disconnected from each other as digital machines become more and more connected to each other; that we are losing touch with what makes us human; that we don't talk to one another anymore.
But if you have ALS, there will come a point where you cannot talk to anyone anymore. Where the disease will come for your voice, just as it comes for your hands and your legs and your lungs. And at that moment, a machine can be the most human thing of all.
Because with existing assistive technology, people with ALS can speak their minds. They can say thank you to the person who feeds them. They can tell a son how proud they are, or a daughter what she needs to know about this world. They can share a word with the love of their life… even if that word is goodbye.
Imagine all of the emotion that comes with having your body slowly attacked from the inside while your mind stays biologically unaffected. Imagine what that brain could teach us about life and death, faith and perseverance, truth and love. Not to mention medicine and treatment. Imagine the secrets they take with them because they cannot afford the machine that will give them a voice.
During the 2014 Ice Bucket Challenge, Team Gleason had over 18,000 donors and raised nearly $1 million. Team Gleason is proud of these contributions, but to give you some perspective, that number is less than half of one percent of all the money raised during last years Ice Bucket Challenge. Since last August, Team Gleason has donated nearly $1.8 million worth of technology and equipment to people with ALS so that they can communicate with family, friends and caregivers. That is nearly double their Ice Bucket funding. Additionally, Team Gleason anticipates spending $2.4 million by the end of the year due to the increase in requests for technology because of changes within Medicare. The group's funds are quickly depleting, but they aren't backing down to help those with the greatest need. Every dollar donated to Team Gleason will have a measurable and immediate impact on people with ALS.
"Team Gleason has spent every dime donated to us—and then some—so others do not have to keep their love, gratitude, hope and anxiety to themselves. Our mission is to assist them right now, because right now is all they have." said Executive Director, Paul Varisco
The group is launching the #GiveTheWord campaign to coincide with all their Ice Bucket Challenge activities that will begin August 1, 2015. Founder, Steve Gleason, and his team have some unique ice bucket plans to inspire the public to give specifically to Team Gleason so others will have a voice. And, the team wants to encourage as many people, groups, organizations, teams, etc to step up their game this year to rival the splash made in 2014.
"By donating to Team Gleason, you are giving lost moments back to family and friends affected by ALS," said Blair Casey, Team Gleason's General Manager. "You are giving them back the words, ALS had taken away. What is a word worth? To people with ALS, it's everything."
To donate to Team Gleason, click here.
Below is a collection of Saints-related #ALSIceBucketChallenges from last year!
Drew Brees, Joe Vitt and Rob Ryan
Mickey Loomis and Greg Bensel
New Orleans Saints quarterbacks
Even Baylen Brees got in on the action!