video
Matter of Mind: My ALS
Three people with ALS confront complex choices in this intimate exploration.
Presented by
Matter of Mind: My ALS is the first of a series of three documentaries, each focusing on a different neurodegenerative disease. This film follows three people living with amyotrophic lateral sclerosis (ALS), a neuromuscular disease with an average survival time of 2-5 years from diagnosis. As ALS progresses, the brain loses the ability to control muscles, resulting in the inability to move, speak, eat, and ultimately breathe.
In Durham, North Carolina, renowned African-American architect Phil Freelon is dealt the diagnosis of ALS on the eve of completing his architectural masterpiece, The National Museum of African American History and Culture. As he progresses towards paralysis and loss of speech, he and his family grapple with the illness’ erosion of control, and the question of what it is to live and die with dignity.
In the rural California town of Arvin, former mechanic Charlie Wren is living on a life support ventilator, completely paralyzed except for his eyes. He is cared for by his wife Angelina Flores Wren, who left her job as a medical assistant to become his 24/7 caregiver. Their story highlights the efforts the two must make to live with this illness without a financial safety net.
In Nutley, New Jersey, Michele Stellato is diagnosed with ALS at the age of 32 and becomes the second person in the world to receive a new experimental treatment at Columbia University. A communications director, she feels a calling to bring her talents to raise awareness and advocate for ALS—fighting for a future in which people can live with, rather than die from this disease. From the nexus of these three stories comes an intimate exploration of the complex choices that people face and the different paths they choose as they live with this progressively debilitating illness.
ABOUT INDEPENDENT LENS
INDEPENDENT LENS is an Emmy® Award-winning PBS documentary series. With founding executive producer Lois Vossen, the series has been honored with 10 Academy Award nominations and features documentaries united by the creative freedom, artistic achievement, and unflinching visions of independent filmmakers. Presented by ITVS, INDEPENDENT LENS is funded by the Corporation for Public Broadcasting, Acton Family Giving, John D. and Catherine T. MacArthur Foundation, Ford Foundation, Wyncote Foundation, and National Endowment for the Arts. Stream anytime on the PBS App. For
more visit pbs.org/independentlens.
ABOUT ITVS
Independent Television Services (ITVS) is the largest co-producer of independent documentaries in the United States. For more than 30 years, the San Francisco nonprofit has funded and partnered with documentary filmmakers to produce and distribute untold stories. ITVS incubates and coproduces these award-winning titles and premieres them on our Emmy Award-winning PBS series, INDEPENDENT LENS. ITVS titles appear on PBS, WORLD, NETA, and can be streamed on various digital platforms including the PBS App. ITVS is funded by the Corporation for Public Broadcasting, Acton Family Giving, John D. and Catherine T. MacArthur Foundation, Ford Foundation, Wyncote Foundation. For more information, visit itvs.org.
MATTER OF MIND: MY ALS is a co-production of Kairos Cinema LLC and ITVS, with funding provided by the Corporation for Public Broadcasting (CPB), in association with PBS. This program was produced by Kairos Cinema LLC which is solely responsible for its content. © 2025 Kairos Cinema LLC. All rights reserved.
