Welcome to WeeklyWilson.com, where author/film critic Connie (Corcoran) Wilson avoids totally losing her marbles in semi-retirement by writing about film (see the Chicago Film Festival reviews and SXSW), politics and books----her own books and those of other people. You'll also find her diverging frequently to share humorous (or not-so-humorous) anecdotes and concerns. Try it! You'll like it!

Tag: Brian Wallach

“Luki & the Lights” Helps Foster Understanding of ALS

Luki the robot

Luki & the Lights robot Luki from the Oscar-eligible animated film

This ten and one-half minute short, “Luki and the Lights” came to my in-box.  I watched it while knowing that there would be no happy ending to this story. Here was the synopsis provided:”Toby Cochran’s LUKI & THE LIGHTS shares a charming and touching story of a robot named LUKi who is slowly starting to malfunction. But even with the struggles ahead, LUKi demonstrates unwavering resilience, painting a vivid portrait of what it means to truly live and the power to find light even in the darkest of times. This poignant animated short was made to raise awareness of ALS as well as to create a platform for children to understand what the disease is. It has qualified to be considered for the 2025 Oscars®.”

ALS ON FILM:

Sascha Groen and her husband, Anjo Snijders, were searching for a tool to help explain his recently-diagnosed terminal disease to their children. Director Toby Cochran is the founder and creative force behind Big Grin Productions. He has 20 years of animation and production expertise. Cochran’s roles span story artist, writer, and director and extends across various entertainment realms, including games, commercials, live-action, and animated series. His distinguished career includes collaborations with studios and companies such as Netflix, Marvel, Disney, ReelFX, Discovery Channel, Bill & Melinda Gates Foundation, Nestle, Lego Universe, and Kuku Studios.

THE SHORT FILM “LUKI & THE LIGHTS

The decision was made to have an active, charming upbeat robot named Luki shown being struck by ALS. Do robots get ALS? While I applaud the idea of helping children understand this horrible and debilitating disease, a robot is made by man and can be fixed by man. People are different from robots. Currently, the ability to “fix” a person who has ALS is beyond the reach of science.

This 10 and 1/2 minute short has won over 20 awards and claims the distinction of being “the first ever animated short film featuring the first-ever animated character to have ALS.” This sounds good until you stop and think that the “character” is not human, so it (he) could perhaps have been “fixed” by a trip back to the robot factory? Not the case with human beings.

 To date, the film has taken home twenty awards including the “Audience Award” at the Florida Film Festival, the “Audience Choice Award” at Indy Shorts International Film Festival and Siggraph Electronic Theater, the Children’s Audience Award at Animayo Gran Canaria, “Best Animated Short” at the Phoenix Film Festival, and the “FilmSlam Student Choice Award for Best Short” at Cleveland International Film Festival.

Producer Adrian Ochoa is an award-winning producer, prior to joining Big Grin, Adrian worked at Pixar Animation Studios, PlayStudios, and Penrose Studios. His credits include Toy Story 2, Monsters Inc., Finding Nemo, The Incredibles, Cars, Wall-E, Cars 2, Monsters University, Inside Out, and The Good Dinosaur. He also worked on various shorts including Cars Toons, live-action shorts, and the animated short Day and Night. He’s also produced over 45 mobile games, including three with Shaquille O’Neal and the award-winning VR animated short film Arden’s Wake.

Throughout the film, there is charming music, but there is no dialogue as such. More accurately, what we have as “dialogue” is mostly incomprehensible, just like the disease itself.

ALS PRIME DOCUMENTARY: “NO ORDINARY CAMPAIGN”

Back in 2022, Katie Couric produced an ALS documentary about the struggle of Brian Wallach, a worker in the Obama campaign who was a successful Chicago attorney at the time he was diagnosed with ALS.   Brian was only 37 years old and had just returned to home with a new child with his wife, Sandra Obrevaya. (They have two children.) Chris Burke, a friend who was a filmmaker, set out to make a film about Brian’s struggle as the couple are thrust into the medical system where they must advocate for themselves and, hopefully, for others.

By the time this film came out the “Ice Bucket Challenge” was 8 years in the rear view mirror (2014).  When diagnosed in 2017, Brian was given only 6 months to live. The couple chose to publicize Brian’s struggle to continue to survive by promoting a bill to fund research into this killer disease. He got some help from former President Barack Obama, who appears in the film. It was during Obama’s campaign in 2008 that Brian and Sandra had met while working to help elect our first Black president.

Normally, ALS kills you within 2 to 5 years. Brian has been fighting the good fight for the past 6 years. He is in the top 20% of survivors.  From their home in suburban Chicago, the couple has seen their efforts to pass “Act for ALS” turn into $100 million for research for the next 5 years.  Since Brian was diagnosed in 2017,and the law passed the Senate unanimously on December 16, 2021, is time running out on the additional funding to solve this huge problem?

If you are as sympathetic to this fight and for funding to continue as I am, you should follow up the 10 and 1/2 minute animated ALS short”Luki & The Lights” with the longer documentary. It is a Prime Video documentary entitled “For Love and Life: No Ordinary Campaign.”

 

“No Ordinary Campaign” World Premiere at Chicago International Film Festival Chronicles Efforts to Cure ALS

“No Ordinary Campaign” at Chicago International Film Festival Chronicles ALS Research

The documentary “No Ordinary Campaign,” directed by Michael Burke, focuses on the fight for more funding and help for patients suffering from ALS. The focal point of this fight for life is ALS sufferer Brian Wallach and his wife. Brian, a former Assistant District Attorney, met his wife. Sandra Abrevaya while working on Obama’s 2008 presidential campaign.

In this fight however, after his diagnosis at only 37, the stakes are literally life and death—for Brian and for all other sufferers of diseases like ALS. Alzheimer’s and Parkinson’s disease. With their background in politics and their friends in high places (Obama speaks in the documentary and the Mark Zuckerberg/Priscilla Chan Initiative underwrote) the couple spearheads efforts to increase awareness and funding for ALS research.

The Wallachs lead the charge in personifying “courage in impossible situations.” They use their organizational skills to unite patients and their families, nationwide, and work to raise funds, testifying before Congress for increased funding to find a cure for these neurological diseases because “hope alone does not get you a cure.” Founding iamalsorg.com is a first step to unifying the many disparate voices crying for help.

One of the impediments to care turns out to be the FDA itself, which had a 6 month wait time to apply for social security disability benefits, when the life expectancy of many ALS patients is, basically, that short. It made no sense, nor did the clinical trial of a promising new drug (AMX0035) that let patients take it, but only for a short time. Patients who were experiencing progress were cut off after the clinical trial period, for no discernible good reason.

Brian and Sandra are shown making an emotional appeal to Congress in which they said, “Do not let another generation of patients die in pursuit of the perfect. Instead, let them be the first generation to live.”

The efforts of the consortium including legislative help from Senators Dick Durbin and Lisa Murkowski, leads to success in the Accelerated Access to ALS bill being signed by President Biden in June (2022) and approval for the use of AMX0035. The group also raised $80 million in funding in 2 years, much more than had ever previously been devoted to research for a cure.

With patients (1 in 300 will get ALS) pleading for help before the Congressional committee, Representative Rosa DeLaura of Rhode Island said, “I promise you we will fight for your survival. Godspeed.”

This was the World Premiere of the documentary from Redtail Media. Katie Couric was one of the executive producers.

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