Article by JOSHUA AXELROD
\nPittsburgh Post-Gazette<\/p>\n
Turning 40 means more than a midlife crisis to Steve Spohn.<\/p>\n
The Bethel Park resident was diagnosed with spinal muscular atrophy, a terminal illness, when he was barely a year old. The disease basically stops the production of a protein that\u2019s important for muscle development and means Mr. Spohn will use a wheelchair for most of his life.<\/p>\n
His mother was originally told, following his diagnosis, that he only had a few months to live.<\/p>\n
But that\u2019s not what happened.<\/p>\n
Mr. Spohn is not only alive, but he has become an important fixture in video game culture as the chief operating officer of\u00a0AbleGamers<\/a>, a nonprofit with a mission to combat social isolation and improve the quality of life for individuals with disabilities through making video games accessible for all.<\/p>\n As his 40th birthday drew near, Mr. Spohn pondered how he could commemorate an occasion this improbable. On Sept. 15, 2020, he issued a challenge to the AbleGamers community with a lofty goal: In honor of his 40th birthday, he hoped to raise $1 million for AbleGamers. Mr. Spohn drove home how serious he was about this endeavor with an impassioned monologue in a video he put out March 18 on AbleGamers\u2019 YouTube account.<\/p>\n Mr. Spohn\u2019s words clearly struck a chord, and his campaign officially crossed the $1 million donation line on Aug. 15. As of early afternoon on Sept. 2, he has raised $1,020,053.98 and counting.\u00a0His efforts have proven so fruitful that he plans to keep this going as an annual event for AbleGamers. Anyone can contribute at SpawnTogether.com<\/a><\/p>\n \u201cI can\u2019t imagine a better way to have spent my 40th [birthday],\u201d Mr. Spohn told the Post-Gazette. \u201cI think that we are put here on Earth for a very limited time. You have to do as much good as you can and fix as much that\u2019s wrong … where you can. I\u2019ve done my damnedest to make sure I\u2019ve helped as hard as I could so that on my last day, I\u2019ve tried.\u201d<\/p>\n AbleGamers is based out of Kearneysville, W.Va., and was founded in 2004 by Mark Barlet, a 47-year-old service-disabled Air Force veteran whose lower-extremity injuries mostly don\u2019t affect his ability to play video games. However, when\u00a0multiple sclerosis took away one of his best friend\u2019s ability to game, the longtime software engineer started a community website to discuss how difficult it was for many individuals with disabilities to enjoy something that brings joy to so many folks worldwide.<\/p>\n One day, Mr. Barlet, who is now AbleGamers\u2019 executive director, wrote an article complaining that playing \u201cWorld of Warcraft\u201d was not an option for people with disabilities. Mr. Spohn sent Mr. Barlet an email disputing that assertion, to which Mr. Barlet welcomed this random responder to write his own story. Three days later, Mr. Spohn obliged. And soon after, he officially became a part of AbleGamers, which transitioned from a glorified blog to a nonprofit in 2009.<\/p>\n \u201cHe joined me, and we changed the world,\u201d said Mr. Barlet, who described Mr. Spohn as\u00a0\u201ctireless\u201d and\u00a0\u201can incredibly intelligent individual.\u201d<\/p>\n He said that Mr. Spohn \u201cwas his own worst enemy all through this\u201d with his constant worrying about having potentially set the bar too high, especially when he expressed unwarranted concern\u00a0after raising about $300,000 in the campaign\u2019s first few weeks that interest would quickly wane.<\/p>\n Mr. Spohn acknowledged that he at first believed he would be lucky to bring in $200,000, but he\u2019s certainly not arguing with how things played out.<\/p>\n \u201cPart of the crux of my personality is that I\u2019m a very sarcastic and confident person, so people think I\u2019m confident in everything I do,\u201d he said. \u201cThe truth is no matter how hard you swing for the fences, there\u2019s no guarantee you\u2019re going to hit it. But I knew at least we\u2019d hit something … and I\u2019m honored we were able to get this far.\u201d<\/p>\n The money will be invested back into AbleGamers, allowing it to stock up on valuable resources such as an updated IT infrastructure, hire new professionals to help further the charity\u2019s efforts to increase video game accessibility\u00a0and, as Mr. Barlet put it, aid AbleGamers in \u201cbuilding the capacity to do more good.\u201d<\/p>\n