Former NFL football player Steve Gleason was diagnosed with ALS at age 34, and within weeks found out his wife was pregnant with their first child. He started making a video blog of himself.
“This is intended to be a gift for you, my child who I have not yet met. My intention is to pass on as much of who I am as I possibly can, to you,” says Steve in his first entry. The movie follows him over a four year period.
Seth Christensen is another ALS patient, and founder of ALS Crowd Foundation. He was 35 years old when he was diagnosed with ALS, and had four children ages 10, 7, 3, and 6 months. He knows the paralyzing fear that comes with such a serious diagnosis, and the emotions and worries for his family. ALS is a disease that progressively degenerates nerve cells that control all muscle movement. Most patients are told they have 3-5 years to live.
Seth recently attended the premier of “Gleason” at the Sundance film festival in Park City, UT. The full length documentary shows very personal moments in Steve Gleason’s daily struggles with his declining physical body, his desire to get his relationships in order, and his attempts to be the best father he can possible be.
“It was very surreal; the feeling that I was actually watching myself,” says Seth. “It felt powerful to see that someone else could relate. I’m sure a lot of people can relate. I think we all struggle. But to see someone like me, that was powerful!”
Gleason took that to heart that he needed to live life as fully as one possibly can. Seth agrees that it has made his family live very differently. He doesn’t take time for granted, but instead chooses to live intentionally.
The film also explored the complex challenge for a caregiver to balance the rest of their life. In Steve Gleason’s case, it is his wife Michel, who is adjusting to her new life of motherhood. She was clear that she was not trying to be known as a saint. She was just doing what needs to be done for her family. In Seth’s case, he sees his wife Amy going through those same challenges.
“It really shows how complex something like this can be on relationships, faith, and money. Even the things that Amy and I fight about, they fought about.The emotions were spot on,” says Seth.
The theatrical rights to “Gleason” were purchased by Amazon Studios. The film will be co-released in theatres with Open Road Films, although a release date has not been announced.
Christensen hopes this film will be the catalyst for the community to finally come together and work on that shared vision of a cure for ALS. He believes it will be the second biggest thing that has ever happened to the ALS community; second only to the ice-bucket challenge that swept social media and provided a boost to fundraising in 2014.
“This film is really beautifully done,” says Seth Christensen. “It will change lives.”