“No White Flags”: Part 4 of 4

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‘No White Flags’: Team Gleason’s Battle with ALS Part 4

by Brian Belko on 02/01/2013 at 10:00 am
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There is currently no cure for ALS. That is the harsh reality that people fighting the disease live with everyday. However, there is technology available that can help ALS patients. These different forms of technology can not only help those with ALS live longer, but they can also help make their lives much more fulfilling.

In addition to finding a cure, providing technology to people with ALS is one of the main goals of Team Gleason.

“Right now, there is no cure for ALS. But in the absence of a cure, technology can in some respects restore what ALS takes away,” says Team Gleason board member, Scott Fujita.

One of the biggest steps that Team Gleason has taken towards that goal of providing technology to others with ALS and other incurable muscular diseases and injuries is opening an assisted living house. This house will offer its residents the ability to live much more independently than ever before.

“With Steve’s leadership, we’re opening the world’s 2nd ALS residence in New Orleans, The Team Gleason House,” says Scott.

“At this residence, patients can live more independently and control many of their daily routine functions with their eyes. It’s amazing, really. Steve wants to push for more, and we will.”

The Team Gleason House for Innovative Living will be located in New Orleans.

It costs approximately $260,000 a year to live with ALS which means that most ALS patients cannot afford even the most basic forms of technology which includes the types of technology that allow them to communicate.

Team Gleason is working to change that. The fact that ALS patients have lost control of their voluntary muscles does not mean that they have lost their voices. Steve Gleason, along with his team, are partnering with technology companies to buy eye tracking computers in bulk so that they will become much more affordable to ALS patients.

However, providing technology and raising awareness about ALS are not the only goals of Team Gleason. They also strive to provide those with neuro-muscular diseases with the opportunity to take part in adventures. The team then documents the adventures and uses them to help spread their message on a global basis.

When asked what message he would tell other people dealing with an ALS diagnosis and their families, Scott had the following to say.

[I would tell them] “to learn as much as possible about the disease and about what might happen next. And to take advantage of the equipment and technology that’s available to patients. I think we can all agree that Steve, with his family and friends, has done just that and then some. So that’s what I would encourage patients and families to do: to be proactive, and to find activities they’re passionate about — activities that inspire them to keep living.”

Those activities help ALS patients to feel like they are not simply keeping themselves alive, but to give them the enrichment in life that everyone strives to fill their lives with.

Some of these adventures that Team Gleason has made a reality have included white water rafting in Italy, cruising on the Panama Canal, canoeing on the Missouri River and even trips to the Super Bowl. They even are planning a trip to Machu Picchu for the spring.

Providing these adventures to ALS patients help them to realize that their lives are still worth living and that enjoyment can still be had. That kind of awareness is almost as important as raising awareness of the actual disease to Team Gleason and all of its members.

With help from Steve’s many NFL friends, Team Gleason’s goal of raising awareness has really started to hit its stride. His NFL family has recently filmed that shows viewers that they are supporting Steve in his fight against ALS and its unrelenting nature.

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The players featured in the video are letting ALS patients know that they are not alone and they are also inviting the rest of the world to join together and find a cure to this terrible disease.

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Team Gleason has come to represent hope for the thousands of people who have ALS along with all the family members and friends whose lives have been touched by someone with ALS. If we can all come together and start a global conversation about the nature of this disease, then the technology can only improve and one day a cure will be discovered. Then nobody else will have to fight such a cruel disease.

“There are still so many mysteries behind this disease, and it’s a disease that unfortunately has been under-funded and largely ignored for far too long,” Scott says.

“Team Gleason intends to do something about that. It’s time for everyone to start putting their heads together to find solutions.”

Full story at: http://www.bonfireimpact.com/2013/02/01/no-white-flags-team-gleasons-battle-with-als-part-4/

 

 

Filed in: Press Room • Friday, February 1st, 2013
 

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About

Scott Fujita

Scott Fujita was born in Ventura, California on April 28, 1979. He was a three-sport standout at Rio Mesa High School in Oxnard, CA before heading to the University of California, Berkeley, where he graduated with Honors in Political Science and earned a Masters degree in Education.

Fujita has played in the NFL for the Kansas City Chiefs, Dallas Cowboys, New Orleans Saints and Cleveland Browns. Read more