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New Jersey man with epilepsy uses hand-painted seashells to help find a cure

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New Jersey man with epilepsy uses hand-painted seashells to help find a cure

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Greater epilepsy awareness could be as simple as a walk on the beach, thanks to one New Jersey man.

Kyle Adamkiewicz, 33, has lived with epilepsy since being diagnosed at age 6. He is now combining his love of art with the power of nature to help bring his seizure disorder into the spotlight.

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In Oct. 2022, Adamkiewicz began collecting seashells from the New Jersey shore, then painting and decorating them with heartfelt messages in search of a cure. He places his works of art along the seaside boardwalks in the hopes that they will inspire strangers to spread the word — and the shells.

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“It started with just painting a few shells, and I figured no one would find them,” Adamkiewicz said in an interview with Fox News Digital. 

“And then I saw people posting them online, and writing so many good and positive comments about the shells and about finding a cure for epilepsy. That motivated me to keep making more and more and more.”

Kyle Adamkiewicz, shown above, now 33, has lived with epilepsy since he was diagnosed at age 6. He is combining his love of art with the power of nature to help raise awareness of his disease. (Adamkiewicz family)

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“And now they have been around the entire world.”

Adamkiewicz doesn’t drive, so his parents — Chuck and Laurie Adamkiewicz — drive him to place his shells.

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“We have shells with us in the car all the time, and he places them in different locations, different towns,” his mother told Fox News Digital.

Adamkiewicz estimates that he’s painted some 1,100 shells so far.

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Many include messages about finding a cure for epilepsy, but he has also created themed designs for various occasions, like Shark Week and Halloween.

Adamkiewicz has painted over 1,000 shells so far. “Our entire living room consists of nothing but shells and paint,” joked Adamkiewicz’s mother. (Adamkiewicz family)

“Our entire living room consists of nothing but shells and paint,” joked Adamkiewicz’s mother.

In addition to a hand-painted design, each shell contains Adamkiewicz’s initials, the year he decorated it and a QR code.

When people find the shells and scan the QR code, it takes them to a website. From there, they can access Adamkiewicz’s Facebook group, his Instagram account and a GoFundMe page set up to help raise funds for people to get “seizure alert” dogs.

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It also links to the Epilepsy Foundation website, where people can learn what to do if they witness someone having a seizure.

“Most people don’t really know how to handle someone if they’re having a seizure,” Adamkiewicz told Fox News Digital. “They just turn their back and walk the opposite way.”

In addition to a hand-painted design, each shell contains Adamkiewiczs’s initials, the year he decorated it and a QR code. (Adamkiewicz family)

“One out of 26 people in the world have epilepsy, but it’s basically a hidden disease that nobody really wants to know about.”

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The Adamkiewicz family has a map of the world hanging on the wall — with pushpins to mark where the shells have been found, they told Fox News Digital.

In addition to locations across the U.S., shells have also been scanned in Mexico City, Greece, Italy, Panama, Canada, Nova Scotia, France, South Korea and Germany, Adamkiewicz said.

“One out of 26 people in the world have epilepsy, but it’s basically a hidden disease.”

“People will find the shells and take them to those places,” Adamkiewicz said. “And sometimes people will ask me for shells to take to wherever they are traveling.”

He’s also partnered with the hospital to get kids with epilepsy involved in his project, bringing shells in for them so they can paint their own designs.

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Touching lives

Beyond helping to find a cure, Adamkiewicz has a goal of reducing bullying of people with epilepsy.

Adamkiewicz is pictured with his mother, Laurie Adamkiewicz. In April, he underwent a procedure to implant a responsive neurostimulation (RNS) device in his brain, which will gather data about his seizure activity. (Adamkiewicz family)

“When I was growing up, if my parents or brother weren’t there, I was always made fun of in school and in the neighborhood,” Adamkiewicz said. “Especially right after I had a seizure — the kids would just stare at me and make fun of me.”

He went on, “I want people to know it’s OK to be friends with someone with epilepsy.”

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At one point, during second and third grade, he estimates that he was having 100 seizures per day.

“It’s been a very hard and lonely life for Kyle, and very painful to see as a mother and father,” Laurie Adamkiewicz added.

The goal, she said, is that the shells will help to make life a little easier for those with epilepsy — and their families.

Adamkiewicz said his seashell project has been a therapeutic endeavor for him. “If it’s been a really bad day, that’s mostly what I’ll be doing,” he said. (Adamkiewicz family)

Adamkiewicz’s mother recalled a man who posted about a personal experience on the Facebook group.

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“His son had passed away, and the man goes to the ocean every morning to say good morning to his son,” she said. “And there was the epilepsy shell, and he said he started crying. He said it was just like a gift to him.”

She added, “You never know whose lives you’re touching.”

Taking control

Since age 12, Adamkiewicz has been a patient at NYU Langone’s Comprehensive Epilepsy Center, one of the largest programs in the nation, where he’s had a series of brain surgeries.

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In April, he underwent a procedure to implant a responsive neurostimulation (RNS) device in his brain, which will gather data about his seizure activity.

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Neurosurgeon Peter Rozman, M.D., performed the surgery alongside his mentor, Werner K. Doyle, M.D., Adamkiewicz’s longtime doctor.

Adamkiewicz and his mom, Laurie Adamkiewiz, are pictured with some of his painted shells. (Adamkiewicz family)

“This system has the capacity to actually record brain activity in the form of electrical waves that detect when the seizures start, so it can deliver an impulse to the brain at that time, with the goal of aborting the seizure,” Rozman said in an interview with Fox News Digital.

The data collected by the device is sent to the neurologist, who uses that information to program the device to better capture and treat the seizures, he said.

“Over time, people see more and more improvement in their seizures,” Rozman said.

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Rozman praised Adamkiewicz’s seashell project, emphasizing the importance of increasing awareness of the condition.

“And it gives him an outlet, too,” the doctor said. “Having other people to talk about your condition with and being part of a community can be very helpful.”

Each shell contains a QR code that a person can scan to access information, resources and fundraisers for epilepsy. (Adamkiewicz family)

In a way, Rozman said, Adamkiewicz is turning his epilepsy into a good thing.

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“It’s beneficial on both sides — for raising awareness and also allowing Kyle to have more control and to drive the story,” he said. 

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“It can be such a devastating thing to have to deal with on a daily basis, and having some sort of license and control over that is really important.”

Adamkiewicz agreed that his project has been a therapeutic endeavor for him.

“We want to teach people how to be kind, and how to help.”

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“If it’s been a really bad day, that’s mostly what I’ll be doing,” he said.

“Like earlier today, I was painting some shells and had my ear buds in, just listening to some music. I’m just so focused on painting the shells that I zone everybody else out.”

Adamkiewicz’s shells have been found in many cities and countries around the world, including in Paris, France. (Adamkiewicz family)

Adamkiewicz and his mother are also working on a children’s book to teach kids more about epilepsy and what to do if someone is having a seizure.

“When someone has a seizure, it can be frightening to other children,” said Laurie Adamkiewicz mother.

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“So the goal is to get some information out there, to take the stigma away from the person who has epilepsy … We want to teach people how to be kind, and how to help.”

Health

How Well Will You Age? Take Our Quiz to Find Out.

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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.

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Red hair may be increasing as study points to surprising evolution trend

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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)

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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.

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Aging in Place: How Technology Might Help You Grow Old at Home

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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.

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Dr. Jack said that age tech had “really allowed me to integrate caregiving into my life, as opposed to caregiving taking over my life.”

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.

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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.”

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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.”

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.

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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.”

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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.

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“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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