Health
What is Angelman syndrome? Colin Farrell’s son is living with this rare disease
Actor Colin Farrell is launching a new foundation to raise awareness of a rare genetic condition called Angelman syndrome, so that his son and others with the disorder will have more support and resources as they transition into adulthood.
“I want the world to be kind to James,” Farrell, 48, told People magazine ahead of his son’s 21st birthday in September.
“All the safeguards that are put in place, special ed classes — that all goes away, so you’re left with a young adult who should be an integrated part of our modern society and, more often than not, is left behind.”
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What is Angelman syndrome?
The syndrome was first described in 1965 by physician Dr. Harry Angelman, according to the National Organization for Rare Disorders (NORD).
It is a disorder of the nervous system, which helps control movements, thoughts and behaviors, as stated by Cleveland Clinic.
Actor Colin Farrell is launching a new foundation to raise awareness of a rare genetic condition called Angelman syndrome, which affects his son — pictured with Farrell, at right, in 2009. (Getty Images)
Most cases are caused by a random genetic change during early development, which means those who are affected usually have no family history of the disease, the National Institutes of Health (NIH) adds.
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“Angelman syndrome is a complex neurodevelopmental disorder resulting from the loss of function of a specific gene called UBE3A, which plays a crucial role in brain development,” Dr. Issac Molinero, pediatric neurologist at Ochsner Children’s Hospital in New Orleans, Louisiana, told Fox News Digital.
The genetic changes that occur with Angelman syndrome lead to significant challenges, including severe intellectual disability, communication difficulties and characteristic behavioral patterns, such as frequent laughter and smiling, according to Molinero.
Model Kim Bordenave and actor Colin Farrell, parents of son James Farrell, are pictured at the 75th Annual Academy Awards at the Kodak Theater on March 23, 2003, in Hollywood, California. (Getty Images)
Dr. Dana Price, pediatric neurologist and director of Angelman Clinic at NYU in New York City, described the disorder as a “spectrum.”
It can include “low muscle tone, developmental delay, poor gait, seizures (ranging from febrile seizures to refractory epilepsy), constipation, poor sleep and challenging behavior,” she told Fox News Digital in an email.
Developmental delays
The condition causes delays in development for the children it affects.
Newborn babies may have trouble latching on or swallowing milk, and after a few months, they may not be able to lift their heads, according to Cedars Sinai.
They may also miss the milestones of sitting up alone, crawling, standing up by themselves or taking their first steps.
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Infants can develop microcephaly, a condition where their heads are characteristically smaller compared to other children of the same age, per NIH.
“Generally, developmental delays associated with Angelman syndrome will become noticeable around six to 12 months of age,” Molinero told Fox News Digital.
Children with the disorder often learn to communicate in other ways, like gesturing, and may be able to understand a simple conversation. (iStock)
Silence is another hallmark clue, experts say.
The baby may be able to say words like “Dada” and follow simple commands, but won’t be able to put together complete sentences or have a verbal conversation, according to Cedars Sinai.
At age 2 or 3 years old, some children may start to have seizures, Mayo Clinic notes.
The rare disorder only affects roughly 500,000 people worldwide.
One typical hallmark of the syndrome is unprovoked fits of laughter, along with frequent smiling and hand-flapping movements, according to NIH.
Children with the disorder often have short attention spans, with most having difficulty sleeping or needing less sleep than normal.
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The sleep issues tend to improve as the child gets older, but the limited speech, intellectual disabilities and seizures may continue throughout life.
Although most people with the condition can’t speak, they learn to communicate in other ways, such as gesturing, and may be able to understand a simple conversation, according to NORD.
Diagnosis and treatment
Doctors diagnose the condition based on blood tests that look for the genetic mutation, experts say.
The syndrome is often misdiagnosed, as initial symptoms can be confused with more well-known diseases like autism or cerebral palsy, according to the Angelman Syndrome Foundation.
Children are often not diagnosed until they are 3 or 4 years old, when they have already started pre-school. (iStock)
Children are often not diagnosed until they are 3 or 4 years old, when they have already started pre-school, experts say.
The rare disorder only affects roughly 500,000 people worldwide, Molinero noted.
Those with the condition have a normal life expectancy, according to NIH.
Individualized treatment
“Although there is no definitive cure for Angelman syndrome, proactive early intervention through therapies, educational support and community resources can significantly enhance the quality of life for affected individuals and their families,” Molinero said.
Depending on symptoms, treatments may include various medications for seizures, sleep, mood, reflux and constipation, Price added.
Those with the disorder may also receive various types of therapy to learn how to communicate non-verbally, to manage hyperactivity and to improve balance. (iStock)
Those with the disorder may also receive various types of therapy to learn how to communicate non-verbally, to manage hyperactivity and to improve balance.
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“This is a very exciting time to work with the Angelman Community, because drug companies are working to develop precision medicine to turn on the missing gene (UBE3A),” Price said.
“Genetic treatment with precision medicine is such a revolutionary prospect — for the first time, we would be treating the disease, not the symptoms.”
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Those who have a family member with Angelman Syndrome or are affected themselves can visit an Angelman Clinic or the Angelman Syndrome Foundation’s website at https://www.angelman.org.
Fox News Digital reached out to the Colin Farrell Foundation for comment.
Health
How Well Will You Age? Take Our Quiz to Find Out.
Every day we’re faced with a zillion small choices: Go to sleep early, or watch one more episode of that Netflix drama. Call an old friend to catch up, or cruise social media. Of course, no single action will guarantee a long, healthy life or doom you to an early grave. But those little daily decisions do add up, and over the long term they can make a difference when it comes to both your longevity and your health span, the amount of life spent in relatively good health.
Scroll through this theoretical “day in the life” and select the option that best fits your typical day. Not every situation will apply perfectly, but think about which choice you’d be most likely to make. This isn’t a formal scientific assessment. The goal here isn’t to assign you a “good” or “bad” score, but to help you understand the central factors that shape the way we age and how long we live.
Health
Red hair may be increasing as study points to surprising evolution trend
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A study from Harvard Medical School indicates natural selection has favored the red hair gene, resulting in a potential increase in the number of redheaded people as humanity continues to evolve.
By analyzing nearly 16,000 ancient genomes spanning 10,000 years, researchers identified a list of traits that nature is actively pushing forward. Among the most prominent were the genetic variants for red hair.
“Perhaps having red hair was beneficial 4,000 years ago, or perhaps it came along for the ride with a more important trait,” the authors noted.
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The study, published in the journal Nature, relied on a large database of ancient DNA from West Eurasia. Using new computing methods, the team was able to filter out random fluctuations in DNA to identify what it called “directional selection.”
Directional selection happens when a particular version of a gene gives an organism a strong survival or reproductive advantage, causing it to become more common in a population faster than it would by chance, according to experts.
Directional selection is when a specific gene provides such significant benefits that it rises in frequency across a population much faster than random chance. (iStock)
Prior to this study, scientists only knew of about 21 such instances in human history, one of which was lactose tolerance. This new research uncovered hundreds more.
“With these new techniques and a large amount of ancient genomic data, we can now watch how selection shaped biology in real time,” Ali Akbari, first author of the study and senior staff scientist in the lab of Harvard geneticist David Reich, said in a press release.
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The data showed that genetic markers for red hair are among 479 gene variants that have been strongly favored over the past 10,000 years. One likely explanation, the researchers said, is a major shift in human history: the transition to farming.
Scientists have long pointed to vitamin D synthesis as a likely driver for the rise of traits like fair skin and light hair. (iStock)
As humans moved away from hunting and gathering and settled into agricultural societies, their environment and behavior changed radically, triggering an evolutionary “acceleration.”
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While the Harvard study provides the first definitive statistical proof that red hair was actively selected during the rise of farming, the researchers noted that the exact prehistoric benefit still requires more study.
However, scientists have long pointed to vitamin D synthesis as a likely driver for the rise of these light-pigmented traits in northern climates.
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While redheads remain a minority of the global population today, the Harvard study’s analysis suggests that they may not be an evolutionary accident.
While redheads remain a minority of the global population today, the Harvard study’s analysis suggests they may not be an evolutionary accident. (iStock)
Instead, the red hair trait was “boosted” by natural selection as humans adapted to the challenges of a modern world, according to the researchers.
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The researchers urged caution in how these findings are interpreted.
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“What a variant is associated with now is not necessarily why an allele propagated,” the authors noted.
Health
Aging in Place: How Technology Might Help You Grow Old at Home
Dr. Megan Jack, a neurosurgeon in Cleveland, often works 60 or 70 hours a week. And she’s completely unavailable when she’s in the operating room. That makes it tough to be a caregiver for her 76-year-old mother, who lives in a separate unit on Dr. Jack’s property, 30 minutes away from the hospital.
To help care for her mother, who has Alzheimer’s disease, Dr. Jack uses an array of high-tech tools, some of which didn’t exist just a few years ago. She manages her mother’s medications with a smart pill box. She changes her television channels with an app, sends appointment reminders through a digital message board — and, with her mother’s blessing, uses cameras for communication and monitoring.
“It’s been invaluable that I can both make sure she’s safe and make sure everything is going well,” Dr. Jack said, “but also give her the independence and the freedom that she still deserves.”
America is aging rapidly. Roughly 11,000 people are turning 65 each day in the United States. And many of them — 75 percent of people over 50, according to AARP’s most recent survey, from 2024 — hope to spend their remaining years in the comfort of their homes, rather than in assisted-living or other care facilities.
One thing that could help fulfill those wishes is the budding field of “age tech,” which encompasses tools that support older adults. Industry experts say that age tech is making homes safer for older adults and is easing the minds of their caregivers, especially those who live far away or work outside the home.
Dr. Jack said that age tech had “really allowed me to integrate caregiving into my life, as opposed to caregiving taking over my life.”
The age tech boom
If older adults don’t have loved ones who are both close by and able to help, they might believe they don’t have a ton of options. They can live independently, or, if they can afford it and qualify medically, they can move to an assisted-living facility or a nursing home, without a lot of choices in between. In-home help can be expensive without Medicaid and can also be difficult to find, given the serious shortage of home care workers.
Age tech can help bridge some important gaps, said Emily Nabors, the associate director of innovation at the National Council on Aging, a nonprofit advocacy group. Already, AARP reports that 25 percent of caregivers are remotely monitoring their loved ones with apps, videos or wearables, nearly double the percentage from five years ago.
“We used to say homes are the health care settings of the future, but they really are health care settings now,” Ms. Nabors said. “Aging in place is very realistic.”
More than 700 companies are in AARP’s AgeTech Collaborative, a group that connects businesses, nonprofits and funders to help get new technologies off the ground. Altogether, the collaborative’s start-ups have raised nearly $1 billion in the past four years.
The products include smart walkers, glasses with lenses that provide real-time captions of conversations for those with hearing issues, and a concierge service that connects older people to drivers and deliveries, even if they don’t have a smartphone.
Ms. Nabors does foresee some affordability and access barriers to age tech, including the lack of high-speed internet in rural areas, but she said one vital resource would be local aging agencies, which can offer advice and, sometimes, free support.
Janet Marasa leaned on the agency near her home in Rockland County, N.Y., to get a free robotic pet for her mother, Carol DeMaio, 80, who has dementia. The pets, manufactured by a company called Joy for All, aim to offer emotional support without the upkeep.
Ms. DeMaio named the robotic dog Sabrina, after a golden retriever who died. The new Sabrina stays at the foot of her bed at night. As soon as Ms. DeMaio stirs awake, the dog reacts. “She said it gives her a reason to get up in the morning,” Ms. Marasa said.
The dog has been a boon to her, too. “It provides comfort and interaction that I can’t provide every second,” said Ms. Marasa, who lives with her mother but works full time for the county government. “It gives her something that she can feel like is totally her own.”
In Broward County, Fla., where the population of residents over 85 is expected to nearly triple over the next few decades, the local agency on aging has used state and federal money and private grants to provide technologies to nearly 4,000 of the county’s seniors at no cost.
Its offerings include a company that uses radar to sense falls and a program that allows seniors to make video calls through their televisions.
“The possibilities are endless,” Charlotte Mather-Taylor, the agency’s chief executive, said. “It’s pretty great to see all the new technology coming out so quickly, and I think that can only benefit our older population and also our caregivers.”
Here comes A.I.
Even technologies not specifically marketed as age tech can help older adults maintain their independence, said Laurie Orlov, founder of the blog Aging and Health Technology Watch. She pointed to video-calling and telehealth platforms; remotely controlled thermostats and lights; and smart speakers, doorbells and watches.
“All technology can be customized to help older adults stay longer in their homes and help their family members feel good about it, or at least tolerate it,” Ms. Orlov said.
That will only become more true with the continued proliferation of artificial intelligence, Ms. Orlov added. Some older adults are already using conversational A.I. to get answers about things like the weather or their medications. (Relying too heavily on A.I. can, however, have negative consequences because chatbots often give flawed medical advice and can lead patients astray.) A.I. can also assist in pattern detection: alerting caregivers to signals that might indicate declines in someone’s cognition or mental health, such as changing their speech pattern or leaving the house less frequently.
One A.I.-powered age tech tool is ElliQ, a tabletop companion robot that looks like a sleek silver desk lamp with a screen. About a year and a half ago, Camille Wolsonovich got one for free, thanks to a local nonprofit, for her 90-year-old father, Bill Castellano. He lives alone in a senior community.
Ms. Wolsonovich, who runs a consulting business, relies on ElliQ to lead her father in exercises and remind him to take his pills and drink water. The robot also asks her father about his sleep and mood via automated check-ins.
“Everything’s just another layer that gives us more confidence, from a caregiving standpoint, that he’s good,” Ms. Wolsonovich said. “I don’t have to necessarily track everything all the time and be overbearing.”
As for Mr. Castellano? He plays trivia digitally and converses daily with ElliQ. The robot, which has a friendly female voice, asks questions, cracks jokes and remembers his likes, dislikes and friends. “She’s great company,” he said. “Everybody around me wants one.”
What about ethical concerns?
Clara Berridge studies the ethics of age tech at the University of Washington.
She has many privacy concerns, namely that most direct-to-consumer products aren’t subject to medical privacy laws, despite being privy to sensitive health information. Though she hopes the federal government will eventually step in to regulate these products, as it has in other countries, the onus remains on the consumer for now.
And even if an age tech product isn’t selling mom’s personal data to the lowest bidder, Dr. Berridge said there’s still the question of whether certain tools are ethical.
“It’s really important for caregivers to recognize that using these new technologies that give them more information about someone can represent greater intrusion into someone’s life,” she said.
What may be well-intentioned monitoring could reveal information that an older adult would rather keep private, such as issues with incontinence, or the comings and goings of a romantic partner.
“It can lead to somebody feeling infantilized,” Dr. Berridge said. “Like there’s not a place to hide within your own home.”
Her research shows that adult children often underestimate how much their parents can understand about technology and how much they want to be involved in tech-related decisions.
She encouraged caregivers to have transparent conversations about privacy implications and to avoid ultimatums or the idea that any decision must be permanent. She said caregivers should put themselves in their parents’ shoes: Is this something they’d want their own children monitoring?
Dr. Berridge is working on an advanced directive for technology, which outlines older people’s wishes for how technology is used in their care. Ultimately, she hopes that questions about age tech will become a standard part of planning for the future.
“If you’re at the start of what, for many people, ends up being a long road of supporting someone potentially through the end of their life,” she said, “seeking to understand each other’s concerns and priorities better is time very well spent.”
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