Matter of Mind: My ALS follows three people living with the fatal illness ALS, in an intimate exploration of the complex choices confronting them and the different paths they find.

Interview with Directors/Producers Anna Moot-Levin and Laura Green

Congratulations! Why did you make your film?

We made this film to tell the story of how people forge their own paths when faced with a rapidly progressive fatal illness. We follow three people living with ALS, each of whom has chosen how to live with this illness whether that be pursuing treatments, elongating life through interventions or focusing on quality of life. We also made this film to tell the stories of people who have been traditionally underrepresented in media and films about ALS. The film follows a young woman, an African-American man, and a working-class man living in a rural community. Created for public television broadcast and community engagement, the Matter of Mind series has a focus on creating a more inclusive conversation about neurodegenerative disease and bringing diverse communities to the center of those conversations.

Imagine I’m a member of the audience. Why should I watch this film?

You should watch this film to see brave people honor life and love to their fullest abilities. We learned so much about what it means to live a joyful and meaningful life from the people who we had the tremendous privilege of making this film with, and we think you will too.

Matter of Mind: My ALS - Michele Stellato at her home in Nutley, NJ. Photo credit: Caitlin Ochs

How do personal and universal themes work in your film?

The theme of choice echoes throughout the film. As Michele says about the aftermath of her ALS diagnosis at the age of 32, “we had to decide what to do with the time we had left.” We see in the film how each individual chooses to live when faced with the diagnosis of a disease with a 2-5 year life expectancy. We all ultimately have a finite time on earth, with our loved ones, and we all will face challenging decisions about how we want to live with that time.

How have the script and film evolved over the course of their development?

Matter of Mind: My ALS is the first in a 3-film series on neurodegenerative diseases. The subsequent films will focus on Parkinson’s and Alzheimer’s. Originally, we had considered one film with multiple neurodegenerative diseases in it. Ultimately, the differences in experience between people living with different illnesses were so great, that we decided to make a series of three separate films, each focused on one disease, in order to do the stories justice.

What type of feedback have you received so far?

Audiences have found it to be a very emotional watch and powerful to see the heterogeneity of this disease and the uniqueness of each individual journey with it. We have been particularly moved by the responses of people from within the ALS community. One woman whose husband passed away from ALS a number of years ago told us that seeing the film made her feel less alone in her experience.

Matter of Mind: My ALS - Charlie Wren and Angelina Flores Wren in Arvin, CA. Photo credit: Ashley Randall

Has the feedback surprised or challenged your point of view?

We have been surprised at how informative and emotional some doctors who specialize in treating ALS have found the film. We would have assumed that after working with ALS patients every day for so many years that the film might feel like familiar ground to them. But several doctors expressed to us that their experience with patients is really limited to the “exam room,” and that seeing patients’ lives at home and with their families gives them a window into a part of patients’ experiences that they don’t usually get to see.

What are you looking to achieve by having your film more visible on www.wearemovingstories.com?

We hope to connect with those who love powerful stories both within and beyond the ALS community, and who can spread the word about the film and Matter of Mind series.

Who do you need to come on board (producers, sales agents, buyers, distributors, film festival directors, journalists) to amplify this film’s message?

We would love to connect with journalists and critics who are interested in writing about the film in connection to its broadcast on PBS’ Independent Lens which will be May 1, 2023.

Matter of Mind: My ALS - Directors / Producers Laura Green and Anna Moot-Levin on location for filming in Nutley, NJ. Photo credit: Caitlin Ochs

What type of impact and/or reception would you like this film to have?

We hope that the film will help increase support for individuals and families who are living with ALS. It is hard enough to live with this devastating illness, but our society magnifies that hardship with a lack of access to resources and support. We also hope that this film will resonate beyond the ALS community, engaging audiences in conversations and reflection about their experiences with illness more broadly.

What’s a key question that will help spark a debate or begin a conversation about this film?

What are our responsibilities as a society to those living with neurodegenerative disease and how can our healthcare system better support those living with incurable illnesses?

What other projects are the key creatives developing or working on now?

The creative team is currently working on the subsequent films in this three-film series - Matter of Mind: My Parkinson’s which will be released in 2024, and Matter of Mind: My Alzheimer’s, which is expected to be released in 2025.

Interview: January 2023

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Matter of Mind: My ALS

Matter of Mind: My ALS follows three people living with the fatal illness ALS, in an intimate exploration of the complex choices confronting them and the different paths they find.

Length: 54:27

Director: Anna Moot-Levin and Laura Green

Producer: David Alvarado, Laura Green, Anna Moot-Levin and Jason Sussberg

Writer: Jason Sussberg

About the writer, director and producer:

ANNA MOOT-LEVIN is an award-winning documentary filmmaker, producer, and editor with a passion for stories about health and healthcare. Her debut documentary, The Providers, aired on PBS’s Independent Lens in 2019. She is also an associate producer of the Academy Award-winning documentary Inside Job (2010). She is based in Brooklyn.

LAURA GREEN is an award-winning documentary director and editor based in San Francisco. Her debut documentary, The Providers, aired on Independent Lens in 2019. She edited When I Write It, which premiered at Tribeca in 2020, and the IDA award-nominated web series The F-Word. She is an assistant professor at San Francisco State University.

JASON SUSSBERG is a documentary filmmaker focusing on the AH! (art and humanity) in STEM. Past life: motion graphic designer; sports television producer with the San Francisco Giants and Golden State Warriors; and community college film instructor. Present life: documentary filmmaker at Structure Films.

DAVID ALVARADO is an award-winning filmmaker with a passion for science, philosophy, and human rights. He is the son of a Mexican immigrant, and although a high school dropout, his pursuit of filmmaking and love of science helped him find a passion that changed his life. He lives in New York City, making films about science to help build a better world.

Facebook: Matter of Mind: My ALS

Instagram: @matterofminddoc

Hashtags used: #ALS #documentary #matterofmindmyals #matterofmindpbs #itvsindies #independentlens #pbs #myALS #LouGehrigsDisease #ALSawareness #ALScommunity #amyotrophiclateralsclerosis

Website: itvs.org/films/matter-of-mind-my-als:

Funders: ITVS

Where can I watch it next and in the coming month?

Big Sky Documentary Film Festival - February 2023