steve gleason, gleason documentary, team gleason, als, gleason at sundance, paul varisco, michel varisco, living with als In this love affair with the city, Gleason sparked a love of his own. Varisco was pregnant, and Gleason had been diagnosed with ALS, a terminal illness that would increasingly halt his neural functioning.
With the help of Michel’s father, Paul Varisco, Gleason founded the philanthropic organization Team Gleason in 2011 to help other ALS sufferers continue to enjoy their time despite the fatal diagnosis.
“We sent people on adventures to show that they could still live life and not just sit home,” Paul Varisco says. Gleason spent each new day exploring fatherhood with young Rivers and falling more in love with his wife as she stepped up to take on every challenge that presented itself.
Turning Family Movies into Film
Watching Gleason motivate the ALS community peaked a desire in his closest friends to share the footage he made for Rivers with a larger audience. At that point, I realized I had the skill set needed to tell stories, and I wanted to help them make this into a film.”
Though there are many shades to Gleason’s story, to his wife, at the heart of it all is the power of love.
“I think it’s so important that people know about ALS and how it affects people and what they have to live with,” she offers. “But secondly, and probably more importantly is that they should take away that this is a love story a love story of two individuals, a son, but a love story from a family that adopted Steve, a love story from a family from the Northwest, the city of New Orleans and now the nation.”
Premiering in Park City was a surreal experience for the Gleasons. Their success was celebrated at an opening night premiere party hosted by Chase.
“It’s something to share our experience with all the people that we love,” Varisco says.
Gleason and his inner team had gathered together as a family to see his story shared at the Sundance Film Festival. At the end of it all, the crowd cheered for Gleason, once again.
