December 4, 2018

Alumnus Maintains His Creative Drive While Battling ALS

By Phenia Hovsepyan

Jon Huntley, who graduated in 1997 from the School of Cinematic Arts with an MFA in Production, recently wrote and edited the short film Matt and Maya. Huntley has been living with advancing ALS, a nervous system disease that impacts all physical functions, rendering him unable to speak or move his arms or legs. A moving story about the love between two people who must overcome great physical limitations, Matt and Maya is film very close to Huntley's heart. 

The process of writing Matt and Maya was very personal for Huntley, “I lost my voice, so I depend on my computer to communicate and share my thoughts,” he says. After moving to long-term care at the Wasserman Campus of the Motion Picture & Television Fund (MPTF) five years ago, Huntley was able to rediscover his creative spirit. Instead of allowing his progressive illness to prevent him from doing what he loves most, Huntley began editing at MPTF by using his eyes to control the computer. “ALS influences my creative efforts by focusing on what I love to do, like writing and editing,” he says. “Keeping my creative mind busy is important.” 

After some time editing non-narrative and short films for Channel 22 at MPTF, Huntley wanted the challenge of editing something more complex, and knew that the only way to have creative control was by writing the script himself. Jennifer Clymer, MPTF’s Director of Media said that Huntley “took on the challenge.” He wrote Matt and Maya based on his experience in long-term care, and the entire MPTF campus was there to help Huntley make his dream into a reality. “Matt and Maya is a love story to MPTF for taking a chance on caring for a person with ALS,” Huntley says. “I have lived with ALS for over seven years thanks to their fantastic care, love, and generosity.” The love and care he has received at MPTF have helped Huntley thrive, and his wife Rebecca Huntley says, “He is doing fantastic. He doesn’t have any respiratory issues, or all of these other things we worry about with ALS. I feel like he is in such good hands.”

Huntley wanted to make Matt and Maya to honor his friendship with husband and wife Guy and Than Wyenn at MPTF. After Than passed away, Huntley decided to tell their stroy. “I wanted to commemorate our relationship by sharing our story,” he says. “I created fictional characters who would honor our story by capturing their love story first, their separation, and then conveying the healing power of food and new friends.” Huntley explained that Guy and Than are the inspiration for the Matt and Maya characters. “Guy and Than were a very special couple, souls, and people. When Than passed away I felt like needed to cheer up Guy by sharing my favorite tamales from the weekly farmer’s market in hopes of cheering her up.”

Being surrounded by people who worked in all aspects of filmmaking, Huntley found incredible support and dedication to make his movie. “I am truly humbled by the production of Matt and Maya,” he says. Huntley was able to cast from his fellow residents and staff members at MPTF, with some caregivers portraying themselves in the movie. He found a director among his peers in Burt Bluestein, who had worked his entire life as a first assistant director. Furthermore, volunteers from all ages came together to make Huntley’s vision a reality. “Matt and Maya is the result of over 100 collaborators,” Huntley says, recognizing everyone who helped in the process. “Thank you to everyone who volunteered their time to tell the story of me and my friends.” Matt and Maya was shot on MPTF’s campus, and is a very authentic portrayal of what life is like for those in long-term care. 

The team at MPTF has had private screenings for the cast and crew of Matt and Maya on the campus, and are working to get the film into festivals.

Bellow: Actress Valerie Webber Elson, MPTF resident who plays the character of Maya, during filming. 

Shortly after the publication of this article, Jon Huntley passed away.