Three years ago, we posted a piece on Steve Gleason, former NFL player for the New Orleans Saints. Diagnosed with ALS in 2011, Steve has made it his mission to spread awareness and advocacy. Since then, Team Gleason has been hard at work to improve the lives of those living with ALS and 2015 proved a year of milestones.
Check out their year in review:
January: While attending the State of the Union Address, Steve had a meeting with Secretary Burwell, the Heads of Medicare and Medicare Advocacy, and leaders in the House and Senate.
April: In Los Angeles, the “Gleason” Project Red Carpet Premier took place and IMG Films announced their full support and partnership on the documentary film.
May: Microsoft released eye drive technology research as a viable solution for mobilizing power chairs. Through their alliance, Team Gleason is working with Microsoft to make this technology more widely available while Steve continues to test it.
Later in May, Steve addressed the Louisiana Legislature and leaders at the Department of Health and Human Services to advocate for benefits for those most vulnerable.
June: Team Gleason participated in the #SmackdownALS campaign with Microsoft in the Cannes Lions International Festival of Creativity. Also in June, Steve received the George Halas Award by the Sportswriters Association.
July: After unanimously passing both the House and Senate, the Steve Gleason Act was signed into law by the President of the United States on July 31st. This law ensures full access to and ownership of communication devices through Medicare.
September: Team Gleason initiated Answer ALS and announced $22 million in funding for its research focus.
October: On October 1st, the Steve Gleason Act went into effect! (Side note: Yes, even though it was signed into law in July, this reflects Medicare timelines that impacted the date it went into effect.)
November: Team Gleason and Answer ALS partnered with the NFL and KBS to create the ALS Awareness campaign, “Game Changer.” The first NFL ALS campaign boldly states, “The NFL has had 1,000s of game changers. ALS needs 1.”
December: The documentary, “Gleason,” was accepted into the 2015 Sundance Film Festival. “Sundance with Steve” is the 30-minute special about the premier of “Gleason” at the Festival in January.
And there’s no rest in sight for Steve and the friends and family who make up Team Gleason. When asked what are some things they plan to take on this year, Associate Executive Director Clare Durrett had this to say:
“While we feel like we have reached some of our goals this past year, there is still so much to do. Much of 2015 was focused on addressing access to Assistive Technology and ultimately the passage of the Steve Gleason Act, but that issue was just one small cog in the wheel of challenges for people living with ALS.
“Our goals are to continue pursuing more advanced and innovative technology, while finding avenues to make it more accessible and affordable. We will always continue our mission to provide equipment and technology, create and offer adventures for people living with ALS and work toward increasing awareness for an ultimate treatment or cure.
“We are so thankful for forums like PatientsLikeMe. It is such an incredible resource for people living with or caring for someone with ALS to get shared information on life with ALS.”
Share this post on Twitter and help spread the word.