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Woman with muscular dystrophy completes 12 marathons in wheelchair for charity: ‘Won’t let it define me’

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Woman with muscular dystrophy completes 12 marathons in wheelchair for charity: ‘Won’t let it define me’

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Born with a rare form of muscular dystrophy, Peri Finkelstein has never let her disorder define her.

Instead, the 24-year-old New Yorker has used her challenges as a springboard to make the world a better place, completing 12 marathons to raise funds for charity.

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In January 2024, Finkelstein’s nonprofit organization — the Team Peri Foundation — exceeded the $1 million fundraising milestone for its Chai Lifeline project, which offers support to families following an illness diagnosis or trauma.

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Making an impact

Muscular dystrophy is a group of more than 30 genetic conditions that affect the functioning of the muscles, according to Cleveland Clinic.

Peri Finkelstein, 24, has raised more than $1 million to help children with deadly diseases, partly through her marathon events. (Team Peri Foundation)

Finkelstein’s form of the condition, called nemaline rod myopathy, causes severe muscle weakness and affects her speech and mobility. 

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Despite her physical limitations, she was inspired to start doing marathons in 2010 when her mother and brother began running them for charity.

“After watching everybody do the marathon and cheering from the sidelines, I knew that I wanted to make more of an impact,” she said during an interview with Fox News Digital. 

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For the first few years, Finkelstein’s mother pushed her in a jogging stroller with all the necessary medical equipment secured to the bottom.

Then, in 2016, Finkelstein decided it was time to stand up and walk a few steps over the finish line, with the help of her physical therapist and her parents.

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Finkelstein heads toward the finish line of a marathon in Miami, Florida, in February 2024. (Team Peri Foundation)

“At that moment, it felt as if I could do anything that I put my mind to,” she said. 

“It was a defining moment, when I realized the only person who could get in my way was myself — and that it was up to me to change my life.”

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In subsequent marathons, those initial steps turned into walking more than 1,000 steps, then a mile, and then a mile and a half, forwards and backwards across the finish line.

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After several years of pushing that “extra mile,” Finkelstein experienced medical challenges in 2022 that made her unable to compete.

“It never dawned on me that part of my life would be over,” she said. 

“You have to push yourself to the limit for each mile marker, as nothing will ever come easily.”

“Once I officially lost that part of myself, I realized that I couldn’t allow this setback to get to me — I knew that I had to keep moving.”

Instead of competing physically, Finkelstein now funnels her energy into her foundation’s fundraising efforts.

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Finkelstein’s form of muscular dystrophy, nemaline rod myopathy, causes severe muscle weakness and affects her speech and mobility. “Not every day is all rainbows and sunshine,” she said. (Claudio Papapietro)

“Since I was 8 years old, my dream was to launch a nonprofit organization of my own,” she said.

“The same mindset that I used to prepare both physically and mentally for a marathon is what I carry into my daily life as an entrepreneur.”

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The Team Peri Foundation strives to make the world a “more connected and inclusive place for all,” Finkelstein said, with the mission to “educate others on the power of inclusion and to disrupt the stereotypical views revolving around disability.”

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‘Not all rainbows and sunshine’

While Finkelstein strives to stay positive and focus on her goals, she acknowledges that her day-to-day life isn’t always easy.

Finkelstein’s family and friends support her during a marathon in Miami. (Team Peri Foundation)

“Not every day is all rainbows and sunshine — some days are harder than others, to the point where severe migraines, fatigue and pain keep me from doing what I have to do,” she said. 

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Finkelstein undergoes different forms of therapy multiple times a week, has frequent doctor’s appointments and is “always in pain,” she shared.

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Her social media posts highlight the highs and lows.

Finkelstein is pictured with her parents, Paul and Lori Finkelstein, on the day her foundation hit the $1 million fundraising mark in January 2024. (Team Peri Foundation)

“My hope is that by sharing bits and pieces of my world — portraying all the different sides of me, whether it’s rather dark or filled with light — I can portray that people with disabilities can live a full life and step out of line in ways that can change the course of their future,” she said. 

To other people living with a disabling condition, Finkelstein advises them, “Use your rareness to your advantage.”

“My time is precious and I still have a lot more to accomplish.”

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“Growing up, I would give anything to blend in and become invisible, as being ‘different’ put a lot of labels on me that caused me to be bullied severely by students and teachers alike,” she said.

“But as I’ve gotten older, I’ve realized it’s OK to be rare.”

Finkelstein is pictured with her siblings, Katy Finkelstein (right) and Joel Finkelstein, in January 2024. She credits her family with supporting her through all her endeavors. (Barbara Quagliard)

Life itself can be compared to the dozen marathons she has competed in, according to Finkelstein.

“You have to push yourself to the limit for each mile marker, as nothing will ever come easily,” she said.

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“All the pain, traumas and setbacks are what enable you to keep going and keep hustling.”

“You have to power through the pain, because there is no other option.”

Future goals

Since hitting the $1 million milestone, Finkelstein and her foundation have launched new projects, including a scholarship fund in partnership with Adelphi University, where she earned her MBA in marketing.

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She also works to boost awareness and education through speaking engagements, social media and podcasting, and hosts various fundraising events throughout the year.

Finkelstein plans to write and publish a memoir to share her life’s journey with the world. 

“It’s always in the back of my mind that I cannot wait to live my life — because of physical disability and medical challenges, it could be cut short,” Finkelstein said. (Team Peri Foundation)

“While I used to be an athlete, I am still just as competitive and am somewhat of an overachiever in the real world,” Finkelstein said. 

The entrepreneur is also acutely aware that life is short.

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“It’s always in the back of my mind that I cannot wait to live my life — because of physical disability and medical challenges, it could be cut short,” she said.

“My time is precious, and I still have a lot more to accomplish.”

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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Health

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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