Acclaimed actor Colin Farrell has announced the creation of the Colin Farrell Foundation, a nonprofit dedicated to supporting adults with intellectual disabilities and their families, inspired by his 20-year-old son James, who lives with the rare neurogenetic disorder Angelman syndrome.

In an exclusive interview with People magazine published this week, Farrell, 48, opened up publicly for the first time about the challenges and joys of raising James, who was diagnosed with Angelman syndrome at age 2½. The disorder, which affects roughly 1 in 15,000 people worldwide, is characterized by developmental delays, severe speech impairments, intellectual disability, ataxia (problems with balance and movement), and frequent seizures—symptoms that can often lead to misdiagnoses with conditions like autism or cerebral palsy.

Farrell recounted the initial terror of the diagnosis, delivered shortly after James’s birth in 2003 to Farrell and then-partner, model Kim Bordenave. “It was a punch to the gut,” Farrell told People, his voice steady but laced with the weight of two decades. Doctors, he recalled, offered a sliver of reassurance amid the chaos: despite the epileptic seizures that would mark James’s early years, they promised a normal life expectancy. “They said he’d live a full life, but in those first moments, all you hear is the fear,” Farrell said. “It’s not about the lifespan; it’s about the quality—the laughter, the independence, the simple dignity of being seen.”

James, now nonverbal and ambulatory but with a distinctive jerky gait that Farrell affectionately likens to a “determined little engine,” has defied odds in ways that humble his father daily. “He’s worked so hard all his life,” Farrell shared, eyes lighting up as he described James’s milestones: learning to feed himself (often leaving his face “like a Jackson Pollock painting” from enthusiastic attempts) and navigating the world with unyielding joy. “Repetition, balance, those small victories—they’re everything. I’m proud of him every day because I just think he’s magic.”

Yet, beneath the tenderness lies a stark reality that propelled Farrell to action. As James approaches his 21st birthday in September 2024—mere months away—the actor faces a looming crisis shared by countless families: the abrupt cutoff of essential support programs designed for children with disabilities. “Once your child turns 21, they’re kind of on their own,” Farrell explained bluntly. Pediatric services, school-based therapies, and funding streams dry up overnight, thrusting young adults into a void where resources are scarce and societal integration feels like a pipe dream. “You’re left with a young adult who should be woven into the fabric of our modern society, but more often than not, they’re left behind,” he said.

This “dire situation,” as Farrell calls it, isn’t abstract—it’s personal. With his resources as a Hollywood heavyweight (fresh off an Oscar nomination for The Banshees of Inisherin and roles in The Batman and the Apple TV+ series Sugar), Farrell has ensured James’s care, including enrollment in a specialized long-term residential community. But he knows privilege isn’t the norm. “I’ve been able to give him a good life, but what about the families who can’t? We have to bridge that gap,” he emphasized. Statistics bear this out: According to the National Down Syndrome Society and similar advocacy groups, adults with intellectual disabilities face unemployment rates exceeding 80 percent, higher incidences of isolation, and limited access to vocational training or community programs. For those with Angelman syndrome specifically, seizure management and mobility aids become even more critical—and costlier—in adulthood, yet public funding often falls short.

Enter the Colin Farrell Foundation, launched this summer with Farrell serving as president of the board and Paula Evans, founder of the Foundation for Angelman Syndrome Therapeutics, as CEO. The organization’s mission is laser-focused: to provide advocacy, education, awareness, and innovative programs tailored to adults with intellectual disabilities. Early initiatives include pushing for policy reforms to extend transitional support beyond age 21, developing inclusive camps and vocational workshops, and fostering community events that combat stigma. “We’re not reinventing the wheel; we’re greasing it for those who need it most,” Farrell quipped, his Irish brogue softening the resolve.

The foundation’s inaugural event, a Winter Ball gala held in Chicago on December 7, 2024, underscored its urgency. Farrell took the stage to rally supporters, declaring, “We have to help people understand how dire the situation is for so many.” Dressed in a sharp tuxedo, he shared anecdotes of James’s infectious laugh—a sound that, despite the nonverbal barrier, fills their Los Angeles home with “pure, unfiltered magic.” Attendees, including fellow celebrities and disability advocates, raised funds to kickstart a camp program Farrell dreams of expanding nationwide. “Imagine a place where these kids—young adults now—can just be, without the world’s judgments,” he envisioned.

Farrell’s candor extends to the emotional toll on families. He doesn’t shy away from the “nightmare” phase post-diagnosis, when dreams of a “special” child twist into fears of inadequacy. “Everyone dreams of having a child who’s special, and then you’re told yours is in a particular way that turns it upside down,” he reflected. Yet, he insists James has been his greatest teacher. “He’s got a goodness in his heart that’s unmatched. If he knew this foundation could help others, he’d say, ‘Dad, it’s a no-brainer.’”

This isn’t Farrell’s first foray into quiet advocacy. He’s long kept James out of the spotlight, protecting his privacy while subtly weaving lessons from fatherhood into his work—like the empathetic depth he brought to portraying damaged souls in films such as In Bruges or The Lobster. In his 2023 Golden Globes speech, he name-checked James and younger son Henry (from a later relationship) as “the loves of my life,” a rare public nod. But now, at 48, with James on the cusp of adulthood, Farrell feels compelled to amplify voices long sidelined. “I’m very private—my home is our safe space,” he told People. “But kindness costs nothing, and respect is free. I want the world to treat him—and everyone like him—with both.”

Experts applaud the timing. Dr. Edwin Cook, a neurogeneticist at the University of California, notes that Angelman syndrome, caused by a deletion or mutation on chromosome 15 (maternally inherited), remains under-researched despite its predictability in symptoms. “Early intervention is key, but adult support is woefully inadequate,” Cook said in a recent statement. The disorder isn’t inherited in most cases—it’s a random genetic event around conception—but its impacts are lifelong. Treatments focus on symptom management: anti-seizure meds like valproate for epilepsy (which affects up to 90 percent of cases), physical therapy for ataxia, and behavioral interventions for sleep disturbances. Communication aids, such as picture exchange systems, help nonverbal individuals like James express needs, but access varies wildly by zip code.

Farrell’s foundation aims to level that field. By partnering with groups like the Angelman Syndrome Foundation, it will fund research into gene therapies—promising trials are underway using antisense oligonucleotides to “unsilence” the affected UBE3A gene—and advocate for federal expansions of programs like Medicaid waivers. “Ultimately, we’re raising awareness so no family feels lost,” Farrell said during a December 9, 2024, appearance on Good Morning America. There, he updated viewers on James: “The spectrum is broad—some with Angelman speak words, some walk fluidly. James is nonverbal, but he’s got spirit for days.”

Critics might wonder if celebrity involvement risks overshadowing grassroots efforts, but Farrell is quick to deflect. “This isn’t about me; it’s all because of James—it’s all in his honor,” he insisted. Donations are already pouring in via the foundation’s website (colinfarrellfoundation.org), with plans for a Los Angeles headquarters by mid-2025. Farrell envisions annual galas, online resource hubs, and even Hollywood tie-ins—perhaps awareness PSAs featuring A-listers.

As the calendar flips toward James’s milestone birthday, Farrell’s message resonates beyond the red carpet. In a world quick to celebrate neurotypical triumphs, his plea cuts through: “James with the world being a kinder place? That’s the dream.” For families navigating similar shadows, the Colin Farrell Foundation isn’t just charity—it’s a beacon, proving that one father’s fear can ignite a movement for dignity.