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The Steve Gleason Act of 2015

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  • Synopsis: Steve Gleason foundation is committed to assisting people with ALS live inspired, productive lives by providing access to life-affirming events and assistive technology - Published: 2015-08-08. For further information pertaining to this article contact: Thomas C. Weiss at Disabled World.

Definition: Amyotrophic lateral sclerosis (ALS)

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease and Charcot disease, is a specific disorder that involves the death of neurons. The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons. ALS is characterized by stiff muscles, muscle twitching, and gradually worsening weakness due to muscle wasting. This results in difficulty speaking, swallowing, and eventually breathing.

Main Document

"Steve was responsible for one of the most dramatic moments in the history of The Saints on September 25th of 2006."

Steve Gleason will always be remembered for his blocked punt on the night the New Orleans Super-dome re-opened for the first time following Hurricane Katrina. He played for The New Orleans Saints between the years of 2000-2008. In the year 2011, Steve was diagnosed with Amyotrophic Lateral Sclerosis (ALS), something that is considered to be a, 'terminal neuromuscular disease.' He's determined to inspire other people by continuing to pursue life adventures despite having ALS. Steve has challenged the worlds of science and technology to identify their most hopeful developments where treatment and a cure are concerned.

Steve, his family members and friends began, 'Team Gleason,' to promote public awareness for ALS, to raise funding to empower people with ALS to live a rewarding life, as well as to ultimately find a cure. Steve was born on March 19th of 1997 in Spokane, Washington. He was a Safety/Special Teams player in the National Football League (NFL). He played college football in the state of Washington. As a free agent in 2008, Steve retired from the NFL after 8 seasons with The New Orleans Saints.

Steve attended Gonzaga Preparatory School and earned consecutive Greater Spokane League (GSL) Defensive MVP awards and was inducted into the Gonzaga Prep Hall of Fame. As he attended Washington State, Steve was a member of the Alpha Tau Omega fraternity. He was signed by the Indianapolis Colts as an un-drafted free agent in the year 2000. Steve was released by the team following the preseason and was signed to The New Orleans Saints' practice squad in November.

Steve was responsible for one of the most dramatic moments in the history of The Saints on September 25th of 2006. He blocked a punt in the first quarter against the Atlanta Falcons, which was recovered in the Falcons' end zone for a touchdown. It was the first score in The Saints' first home game in almost 21 months, during which time Hurricane Katrina had severely damaged the city. The same year, Steve won the, 'Special Teams Player of the Year,' award for The Saints.

Steve went on to form the One Sweet World Foundation which is a charitable foundation with a focus on environmentalism and literacy. Following Hurricane Katrina, his foundation led a group of institutions and foundations in launching, 'Backpacks for Hope,' an initiative to provide relief to young victims of the hurricane in the form of school supplies and backpacks to put the supplies into. Greater than 7,000 backpacks and additional assistance was donated from around America. Steve spent much of his career visiting people at the New Orleans Children's Hospital.

While playing for The New Orleans Saints, Steve was known for his long locks hanging out of his helmet. He donated his hair to, 'Locks of Love,' on a regular basis. Locks of Love provides hair for wigs for children with cancer.

Following his retirement from football, Steve attended Tulane University to earn his Master of Business Administration degree. In January of 2011, he was diagnosed with Amyotrophic Lateral Sclerosis (ALS). He is married to native New Orlean Michel Varisco. October of 2011 found the couple having their first child, Rivers. In an attempt to capture the essence of himself and his life, Steve is building a video journal library for Rivers. At this time, Steve and his foundation are highly committed to assisting people with ALS to live inspired, productive lives by providing access to life-affirming events and assistive technology until a cure can be found.

The Mission of the Gleason Initiative Foundation

The mission of the Gleason Initiative Foundation is to help provide people with neuromuscular diseases or injuries with leading edge equipment, services and technology. The Foundation creates a global conversation about ALS with the goal of ultimately finding solutions and an end to the disease. It raises public awareness regarding ALS by providing and documenting extraordinary life adventures for people with muscular injuries or diseases.

A Bill for Steve

Mrs. McMorris Rodgers introduced the following bill, which was referred to the Committee on Energy and Commerce, as well as the Committee on Ways and means, for a period to be determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned. The Bill states:

A BILL

To amend title XVIII of the Social Security Act to provide Medicare beneficiary access to eye tracking accessories for speech generating devices and to remove the rental cap for durable medical equipment under the Medicare Program with respect to speech generating devices.'

Section 2 of The Bill is concerned with providing Medicare beneficiaries with access to speech generating devices and eye tracking accessories. In general, Section 1861(n) of the Social Security Act is amended by inserting, 'and eye tracking and gaze interaction accessories for speech generating devices furnished to individuals with a demonstrated medical need for such accessories after appropriate organizations.' The amendment made by subsection (a) will apply with respect to devices furnished on or after January 1st of 2016.

Wednesday, July 15th found former New Orleans Saints player Steve Gleason witnessing his fight against ALS scoring a huge victory when The House passed the Steve Gleason Act; not it is the law of the land. David Vitter, U.S. Senator for the state of Louisiana, presented the news that President Obama signed the act into law. House Majority Whip Steve Scalise released the following statement concerning the President's signing of the Steve Gleason Act into law:

"The signing into law of the Steve Gleason Act is a huge victory for every American who refuses to be defined by their disabilities. Steve Gleason served as a true inspiration and led the effort to champion this issue, ultimately helping us push this legislation through Congress and now into law. Today, thanks to Steve Gleason, thousands of people with disabilities who were once forced to suffer in silence will now have a voice so they can live life to the fullest."

Awareness: ALS - Lou Gehrig Disease

White navy blue stripe ribbonThe white navy blue striped ribbon is the symbol of awareness for Amyotrophic lateral sclerosis (ALS) or Lou Gehrig Disease, Aran-Duchenne, Gehrig's Disease, Lou Gehrig's Disease, Motor Neuron Disease). The month of May is National ALS Awareness Month and each year the International Alliance of ALS/MND Associations celebrates 21 June as the global awareness day of recognition of ALS/MND. In Canada, June has been declared as ALS Awareness Month by the Canadian Minister of Health.

Learn More About Steve Gleason

  • Steve Gleason
    news.microsoft.com/stories/people/steve-gleason.html
  • Steve Gleason accepts apologies
    espn.go.com/nfl/story/_/id/9400036/steve-gleason-accepts-apologies-fired-radio-djs
  • Text of the Steve Gleason Act of 2015
    https://www.govtrack.us/congress/bills/114/hr1919/text


Related:

  1. Neurological Disorders: Types, Research & Treatment
    https://www.disabled-world.com/health/neurology/
  2. Identification of Potential Treatment for ALS - ALS Therapy Development Institute - (2010-03-28)
    https://www.disabled-world.com/health/neurology/als-treatment.php
  3. New Approach for Treating Amyotrophic Lateral Sclerosis (ALS) - Thomas Jefferson University - (2014-11-23)
    https://www.disabled-world.com/news/research/als.php





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