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We in the ALS community are always on alert about the portrayal of ALS and similar disabilities in books, movies, tv shows, and other forms of media. And I have exciting news about what I think is a big step forward in the inclusiveness of disabled actors – – and a rare opportunity to help raise awareness about ALS – – in the movies!
Here’s the news:
I have been in contact with a writer/director based out of Los Angeles, who is in pre-production with a film he wrote where the lead character has ALS. The film is a genre piece and doesn’t center on the disease. Rather it’s the focal point of the character’s journey, which through the trials of the story, she comes to accept, and learns to live the life she has with meaning and optimism.In his quest to want to tell this story correctly, he has reached out to me with questions about my own experiences with ALS, and I have been happy to help him with this. Now, he is underway with casting and so far, is still auditioning for the lead roles. One of the minor characters is in an advanced stage of ALS and has a conversation with the lead (who was just diagnosed).
Here’s the exciting part – – – In an effort to be authentic as possible, the director would like to cast an actual ALS patient. So, if you are interested, and living in either California or Oregon, please read the casting call that I have posted in the comment section below.
I plan to post updates as the project moves forward – – giving you a front-row seat to what I’m calling “ALS in the movies!”
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Hello ALS community,
We’re searching specifically to cast an actor with ALS. More information about the role is below. As of now, looking for actors based in California or Oregon. Thank you so much for your consideration.
CASTING FOR AN INDEPENDENT THRILLER FILM
THIS IS A ONE-SCENE ROLE ON A LOWER-BUDGET FEATURE FILM.
WE WILL CONSIDER AN ACTOR WITH EXPERIENCE OR A NON-ACTOR.
THE ROLE WILL SHOOT ONE DAY IN MARCH, PER AVAILABILITY. ROLE CAN BE MALE OR FEMALE, PREFER AGE of 30s-50s.
[JAMIE] Jamie is a person with ALS; he or she is in a wheelchair. Jamie takes part in a FaceTime session with ‘Elsa’, asking her questions about her situation — and gives her pointed, empathetic advice regarding her recent diagnosis…3 speeches & 7 lines, 1 scene. Seeking an actor or non-actor with ALS who’s using an AAC device for speech.
This is a one-day role in the movie, we are looking for someone based in either California or Oregon. Any ethnicity. Paid job, at scale plus ten SAG/AFTRA Ultra Low Budget Agreement rate for one day.Producers are committed to diversity, inclusion, and authenticity. We strongly encourage performers {with ALS} to apply for this role.
AUDITION OVER ZOOM IS REQUIRED.
UPDATE: this role has been filled. Check back for updates on the movie’s progress.
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I hope one of our forum members will audition and be picked for the role!
If you are the one, please let us know… and, keep us updated on how it all goes 🙂
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Hi Dagmar! I auditioned yesterday and it was a marvelous experience! I was an actress before ALS and I thought it was gone forever. I so enjoyed working with them. I will let you know what comes of it. Thank you for the connection. Lisa
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Hi friends! Just an update. I am filming April 20th. So excited to represent! I will keep you in the loop. Lisa
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I am looking forward to filming in two weeks! I am sending my son to pick up my late sister’s wheelchairs to use for the shoot. We will be filming in San Francisco My sister’s home and table was chosen by the production company. Thank goodness for family! Lisa
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It’s a wrap! We filmed yesterday and it was an amazing experience. The director and film crew were so thoughtful. It was filmed in my sister’s house in San Francisco. We worked around the sounds of the city! It was strange to be in my sister’s wheelchair. It fit me . The makeup artist did her best to make me look sick, as my character was much more impacted by ALS. Such a memory!!
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Congrats Lisa! What a unique and wonderful experience. it’s great to hear the feedback about the director and crew. I had emailed back and forth with the director early on – – when he asked me if I knew anyone with ALS who might want to be in his movie (HA!) and he was kind and considerate then too. ………..and to be in your sister’s wheelchair (hugs to you).
You are paving new ground for the visibility of the ALS community. Thank you again for stepping up. And for keeping us informed along the way.
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