Rare Disease Report

Ex NFL Player (and ALS Patient) Wants ALS Patients to Have Earlier Access to Hi Tech Equipment

MAY 14, 2017
James Radke
Amyotrophic lateral sclerosis (ALS) patient and former professional football player Steve Gleason is a tenacious man.
 
ALS or "Lou Gehrig's Disease," is a progressive neurodegenerative disease affective motor neurons. Muscle weakness or stiffness are early symptoms of ALS but as the disease progresses, the patient will lose the ability to walk, talk, swallow, and breath.
 
The loss of those abilities now confines Gleason to a motorized wheelchair but his drive and determination that made him a hero playing for the National Football League’s (NFL) New Orleans Saints are still within him. He is now leading his Team Gleason organization to make it easier for ALS and other people with handicaps to lead independent, productive lives.
 
While Gleason is confined to a wheelchair and can only move his eyes, he is still very active. Thanks to a special EyeDrive technology, he can maneuver the wheelchair using eye movements. He is also using that technology to communicate.
 
And Gleason knows he is lucky to have that technology.
 
His goal is to make it possible for others to have the same access to some of the new technologies he has been fortunate enough to experiment with.
 
Last week, Gleason attended a Louisiana state congress meeting to support House Bill 179 by Representative Julie Stokes that would bypass the FDA waiting period requirement of perhaps 7 years for new devices to be approved as part of Louisiana's "Right to Try Act."
 
According to Gleason, the eye technology is transformative. 
 
"Driving a wheelchair with one's eyes might sound crazy, but I do everything using my eyes — type, talk, tweet, play music, open doors and control the temperature in my house," said Gleason.
 
Currently, only patients accepted into the FDA trials involving EyeDrive have access to the technology that Gleason uses – the same is true for other FDA trials. Bill 179
would allow patients not in those trials access to that technology.
 
Bill 179 piggybacks the Right to Try Bill currently under review, that also bypasses the FDA to give patients access to experimental drugs not yet approved by the FDA.
 
Amyotrophic lateral sclerosis (ALS) or "Lou Gehrig's Disease," is a progressive neurodegenerative disease affective motor neurons.
 
Muscle weakness or stiffness are early symptoms of ALS but as the disease progresses, the patient will lose the ability to walk, talk, swallow, and breath.
 
Life expectancy of an ALS patient following diagnosis is 2 to 5 years however, some can live longer. Approximately 5,600 people in the U.S. are diagnosed with ALS each year and 30,000 have the disease at any given time.


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