Each year on June 21, we join with the International Alliance of ALS/MND Associations to mark Global ALS/MND Awareness Day, a day of recognition for everyone, everywhere living with ALS/MND around the world, and a day to honor those working in the search for causes, treatments and ultimately a cure.
This Global ALS/MND Awareness Day, we want to highlight the illuminating story of how the film “LUKi & the Lights” came about, and how it is helping children from every country and culture who have to face ALS/MND as part of their lives.
Comprehending the severity of an ALS diagnosis is difficult enough as an adult, but imagine what it would be like as a young child. How do you possibly share that type of news with children in a way they can understand? Where do you even begin?
That was the challenge faced by Anjo and Sascha Snijders.
When Anjo was diagnosed with ALS in 2017 at the age of 35, he and his wife Sascha realized the vision of their future with their two young children in the Netherlands was forever changed. For both Anjo and Sascha, honesty with their children, aged just seven and two at the time, was of great importance. Both teachers by trade, they began to look for resources to help explain their father’s illness but found little if anything.
And with that, the short, animated film, “LUKi & the Lights” was born.
“There was no real visual enticing material for children that on a basic level explained what ALS was and what it does,” shared Anjo during a Connecting ALS podcast in 2022. “And we came up with the analogy for the light bulbs, and because LUKi is a robot, you can literally open him up and look at what's wrong. And also, the robot, he's relatable for every ethnicity, every gender.”
“LUKi & the Lights” follows the story of an active, charming, and upbeat robot named LUKi who enjoys soccer and spending time with his friends. His life is quickly turned upside down when he is diagnosed with ALS, but with his friends by his side, he bravely faces the disease and lives his life to the fullest.
Using no language, the film is a unique resource to help children all around the world better understand what ALS is, presenting information in an honest and accessible way.
“We want to empower children and parents to talk about this, to talk about what ALS does to their lives. Because a lot of times children become isolated and it's hard for them to talk about it with their parents, but also with their peers and their teachers,” said Anjo. “So, we want LUKi to bridge that gap and empower them, give them words, which is odd because LUKi, the film is a languageless film, there's only robot gibberish in the film, but there's a good reason for that. We want this to be universal.”
Produced by Big Grin Productions, Global Neuro YCare, and the ALS Association, "LUKi & The Lights" aims to empower children and parents to discuss ALS openly and provide them with the tools to navigate the difficult conversations surrounding the terminal illness.
"In the process of creating 'LUKi & The Lights,' our team delved deep into understanding ALS, its impact, and the experiences of those affected by it," said Toby Cochran, director and founder of Big Grin Productions. "Our goal was to create a film that not only entertains, but also educates, offering a genuine portrayal of ALS for audiences worldwide."
Sadly, Anjo passed away in March, but his legacy will forever live on thanks to LUKi. “LUKi & the Lights” made its official premiere earlier this year, and now is available for the whole world to see, just in time for Global ALS/MND Awareness Day.
Learn more and watch the film here
Global Neuro YCare has also created an Educational Guide and coloring book featuring LUKi and his friends, for children and families to use to help learn about ALS. "We want to bridge the gap between children and parents, providing them with the words and understanding to discuss ALS," said Melinda S. Kavanaugh, PhD, LCSW, President of Global Neuro YCare, content expert and co-producer.
It will take all of us, working together around the globe, to make ALS livable until we can cure it. Global ALS/MND Awareness Day reminds us there are dedicated, talented people around the world working tirelessly each and every day to make that happen.
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