Author: CNN Newsource

By Karen Morfitt

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    COLORADO (KCNC) — This week marks Rare Disease Week, a time when families across the country are sharing their struggles with access to treatments and clinical trials, and their hopes for change, with lawmakers and federal health officials. A Colorado family is now adding its voice to the chorus after a clinical trial their son relied on suddenly ended.

From newborn stretches to daring toddler days, a photo album tells the story of Caleb Burgess’ childhood, one filled with motion, milestones and memories.

“Always active,” his mother, Stephanie Burgess, said. “We didn’t know he had it. He was crazy, giving you a heart attack.”

Sports became a defining part of Caleb’s life. Family photos document Little League games, championship moments and trips to Coors Field.

“We went to the Rockies,” Caleb said, recalling a moment when then-manager Bud Black invited him into the dugout. “I was standing right there while all the players were coming in. They had all signed the bat.”

But the photos don’t tell the full story.

“The work I put in not only in practice, but behind the scenes. [It took] so much just for me to even be on the field,” Caleb said. “It hurt really bad.”

His parents say mobility issues and hearing loss appeared early on, but they were repeatedly dismissed as growing pains.

“It was terrifying,” Stephanie Burgess said. “I thought something was wrong, and no one believed me. It’s hard to put into words.”

The family spent years searching for answers. Stephanie Burgess said advocating for her son often meant pushing back against skepticism from medical professionals.

“If you go to the doctor and say you’ve been researching on the internet and reading medical journals, they’re like, ‘That’s nice, you’re not a doctor,'” she said. “If I didn’t, we might still not have a diagnosis.”

Caleb was eventually diagnosed with fibrodysplasia ossificans progressiva, or FOP, an extremely rare genetic disorder in which muscles, connective tissues and ligaments are gradually replaced by bone. There is no cure and no FDA‑approved treatment.

“It just seems made up,” Caleb’s dad, Scott Burgess, said. “Like this can’t be happening.”

For most patients, the diagnosis means limiting or completely avoiding physical activity. The Burgesses chose a different path.

“They said, ‘Be very careful. Don’t let him get hit with a baseball,'” Stephanie Burgess said. “But we decided early on we were going to let him be. He decided he was going to take that risk, and we were going to support him.”

That decision came with consequences. At 16, a baseball to the back triggered new bone growth and ended Caleb’s athletic career.

“I just wanted things to change,” Caleb said.

In 2023, change seemed to arrive when Caleb joined a clinical trial for an experimental drug targeting FOP.

“The first day he took it, he felt different,” Stephanie Burgess said. “His pain was less. Over time, little to no pain. The swelling was gone. He wasn’t having flare‑ups. It was like he got a whole new life.”

For nearly two years, the family saw steady improvement.

“It felt like a new kind of hope,” Caleb said. “A feeling of somewhat normal.”

That hope was shaken in December when the drug’s manufacturer announced it was ending the trial after failing to meet a required endpoint of reducing bone growth.

“The message said, ‘Speak with your physician for other options,'” Stephanie Burgess said. “For which there aren’t any.”

Now, the Burgess family is sharing its experience not just for Caleb, but for others living with rare diseases. They are urging regulators and policymakers to rethink how rare disease research and drug development are evaluated, particularly when trials end despite quality‑of‑life improvements.

“I don’t think this interview is going to change this particular drug outcome,” Stephanie Burgess said. “We’re not going to get the drug back. I think their hands were tied by the FDA. But if there’s a way for flexibility, to get medication we know is working, that would be the ultimate outcome.”

Despite the setback, the family believes Caleb’s story is far from over.

“It gave him an amazing two years,” Stephanie Burgess said, “and hope that something will work.”

“There’s hope,” Caleb added. “Something better is coming down the road.”

As part of Rare Disease Week, the FDA held a town hall addressing some of these concerns. The agency’s current director said decisions will come down to common sense, reaffirming a commitment to reducing regulatory hurdles while continuing to balance patient safety.

Please note: This story was provided to CNN Wire by an affiliate and does not contain original CNN reporting. This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.

By Marissa Armas

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    DALLAS (KTVT) — When you walk into the Naturally Isis salon off Preston Road in North Dallas, you can feel the joy.

Owner and hairstylist Isis Brantley radiates that same energy.

“I feel the waves of the energy flowing right now. I feel the energy of creativity and magic happening right now,” Brantley said.

But when you ask Brantley about her legacy, it hits her at the heart. She spends much of her time teaching students in Dallas and across the country the art of natural hair braiding and the rich traditions behind it.

“I get to see it, I get to feel it, I get to see the babies smile,” she said. “We’ve compromised so much trying to look like someone else. We’ve lost our hair, we’ve lost our love, we’ve lost the understanding of what to do. That’s why I train and teach the arts, so you can know how to work with your child’s hair without using a comb.”

Getting here wasn’t easy. Brantley has spent decades fighting for the right to braid hair and for the deregulation of hair braiding. In 1997, she was arrested for braiding without a cosmetology license.

“I said, ‘OK, if that’s what you want me to do, is for me to go to jail for braiding… y’all want to embarrass me in front of my community? Seven cops coming in to arrest me? You want my kids to know that I’m a criminal because I braid hair? OK, let’s do that,'” Brantley told CBS News Texas.

While she was eventually grandfathered in, she was barred from teaching braiding to others. That moment sparked a yearslong battle with the state.

In 2013, Brantley took her fight to federal court, suing Texas over laws that restricted local businesses from teaching braiding unless they converted their locations into barber colleges. In 2015, she won. A federal judge ruled the laws unreasonable and unconstitutional – a decision that reshaped the industry and opened doors for hair braiders across the state.

“It does make me so proud,” Brantley said. “I’m so happy to see we finally are creating a respectful and open world for natural hair.”

Over the years, Brantley has worked with big names like Erykah Badu and Stevie Wonder, but she says her work with the community – and with her five children – matters most.

“I want kids to be able to take a mirror and look at the mirror and literally say, ‘I love myself,'” she said. “My next step is to teach economic freedom and to teach the love of oneself, and to have people understand that this is something that not only I should be doing, but the parents must do as well.”

As Brantley reflects on her arrest nearly 30 years ago, she says it taught her patience and the power of healing. She hopes to continue teaching the next generation, passing on the traditions that helped heal her.

“I hope they know that they’re beautiful. I hope they know that anything they desire to do, they can do it,” she said. “I hope they know that if they rebel against any aspect of natural hair, it’s OK, and I want those who embrace the beauty of natural hair to know that too is OK.”

In September, Brantley and the city of Dallas will host the 11th annual Braid Freedom Crown Fair Festival. More information on classes and upcoming events is available at naturallyisis.com.

Please note: This story was provided to CNN Wire by an affiliate and does not contain original CNN reporting. This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.

By Adam Duxter

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    BLOOMINGTON, Minnesota (WCCO) — The rotunda at the Mall of America in Bloomington, Minnesota, has hosted nearly every type of event over the years, but celebrated a first-of-its-kind event on Saturday.

For nearly 12 hours, competitive pickleball matches filled the rotunda — all to benefit Every Meal, a nonprofit working to fight child hunger by providing Weekend Food Bags to children in need.

Every Meal Founder and President Rob Williams says during Operation Metro Surge, the organization has been stretched thin.

“We’ve provided almost 40,000 bags of food since January for that specific mission of serving those people at home,” Williams said. “That’s in addition to the 13,000 kids every week we serve through our weekend meal program, that’s giving kids bags of food on Fridays to take home for the weekends.”

Williams said Saturday’s event served as a way to draw attention to their efforts.

“That’s what we’re about. Engaging the community to make sure kids in their community have the food they need to learn, grow, thrive and be a part of that community,” he said. “I’m seeing people stop and look, and they’re wondering – what’s this about? They’re able to see information about every meal, and learn about, well, they’re playing pickleball, but they’re doing it because they want to make sure kids have food in their bellies on the weekends.”

Please note: This story was provided to CNN Wire by an affiliate and does not contain original CNN reporting. This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.

By Meghan Schiller

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    PITTSBURGH (KDKA) — On most days, you’ll find 8-year-old Xander O’Brien in his basement, hockey stick in hand, practicing slap shots on his net. But off the ice, he’s working toward a very different goal: collecting 300 boxes of cereal to help feed kids in need.

Powered by marshmallows and a big heart, Xander O’Brien has strong opinions about breakfast.

“I like Lucky Charms,” he said.

Colorful cereal boxes fill his basement. Lucky Charms, Fruity Pebbles, Rice Krispies, Apple Jacks and so many others aren’t just breakfast favorites. They’re the centerpiece of Xander’s growing cereal drive benefiting a local nonprofit called The Bag Brigade.

Last year, he collected 125 boxes. This year, he’s aiming higher.

“We need 300,” he said.

Xander O’Brien’s mom, Sarah O’Brien, first discovered The Bag Brigade a few years ago. The volunteer-run program supports students who are food insecure in the Belle Vernon Area School District by packing bags of food for kids to eat on the weekends and also over the summer.

She began volunteering on Tuesday nights, packing bags filled with easy-to-prepare, shelf-stable meals. Eventually, Xander started tagging along. Then his little brother came as well.

“When he feels comfortable in an environment, he thrives,” said Sarah O’Brien. “He loves to go there. And he loves packing bags because, number one, you get to walk in a circle, so it’s like you’re trick-or-treating.”

But along the way, Sara O’Brien says something bigger happened.

“You want your children to learn when they’re younger that not everyone has what they have,” she said.

Kathy Kelly co-founded The Bag Brigade 10 years ago out of the Gospel Alliance Church. She tells KDKA’s Meghan Schiller what started small has grown dramatically.

“We started in one elementary school with 19 or 20 bags,” said Kelly. “That grew to all four schools and the high school.”

When COVID hit, the need skyrocketed.

“That first week, we packed 900 bags,” she said. “We realized we really needed to be doing this year-round.”

On Friday, volunteers pack food bags for 242 students during the school year. The goal is simple: provide food that kids can prepare themselves.

“Anything shelf-stable and something kids can fix themselves,” said Kelly.

Items like mac and cheese cups, peanut butter, soup, ramen, Slim Jims, pudding cups and applesauce are always needed —anything a child can open and eat.

The larger cereal boxes aren’t distributed in weekly bags. They serve a different and fun purpose. Every year, the schools host a massive cereal box domino drop.

Hundreds of boxes are lined up throughout the school hallways. When the first box tips, it sets off a chain reaction that sends cereal tumbling down the line, filling the building with cheers.

“It doesn’t do it justice on video,” said Sarah O’Brien. “Last year, he got to tip the first box at Rostraver Elementary. That’s like a big to-do – super celebrity.”

For Xander O’Brien, it was unforgettable.

“Last time we did dominoes, we pushed cereal all the way down. I was the one who pushed it,” he said.

The more boxes collected, the bigger the domino drop. And that means even more motivation to reach that 300-box goal.

Xander O’Brien is collecting cereal boxes through March 15. The family has created an online wish list where supporters can donate or order boxes that ship directly to the drive.

Please note: This story was provided to CNN Wire by an affiliate and does not contain original CNN reporting. This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.

By Mahsa Saeidi

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    WOODLAND PARK, New Jersey (WCBS) — Neighbors of a home displaying hateful symbols in Woodland Park, New Jersey, say they have complained to police, but authorities said while it’s disgraceful, it’s still protected speech.

CBS News New York’s Mahsa Saeidi spoke exclusively with the homeowner, who has now begun to take down some of the images.

Swastikas and disturbing messages, including “the only good cop is a dead 1 (won),” can be seen on the windows, the front door and a tarp hung next to the home.

Neighbors in the building next door said the man who lives there is their longtime landlord. They said they have been complaining to police about the hateful symbols since summer 2025.

“Every single neighbor who see here have all complained to the cops,” said the neighbor, who wished to remain anonymous.

The neighbor said police have repeatedly told them the man’s actions are protected by the First Amendment, but the neighbor felt the display went beyond First Amendment rights.

“Having a swastika? And then having my picture and my sister’s picture with our names on there, and nothing can be done?” the neighbor said.

The First Amendment does broadly protect offensive speech. The law can punish hate only when it crosses into a threat.

CBS News New York emailed authorities, including Woodland Park’s police chief and the Passaic County prosecutor’s office.

Woodland Park Mayor Tracy Kallert responded with the following statement:

“The fact that this resident has chosen to display such hateful imagery on his own property — and that it is protected under the First Amendment — is a disgrace.

“While the law may protect an individual’s right to express these views, it does not reflect the values of our community.

“Hate has no home here.

“While no one wants this kind of attention brought to our community, perhaps this will be the final catalyst needed to put an end to this grotesque display after months of trying.

“We remain firmly committed to fostering a community rooted in respect, dignity, and unity.

“We will continue to explore every lawful avenue available to us to put an end to this and will not stop standing up against hate in all its forms.”

Friday, Woodland Park police officers showed up at the home. A man inside the home spoke with officers through a window, and said he didn’t want to be arrested and that he wasn’t going to harm himself or others.

With the man’s permission, officers began to remove much of the display.

After officers left, the man spoke to CBS News New York, identifying himself as Robert Foglia.

“Can you tell me why you have a swastika on the door?” Saeidi asked.

“Because I wanted to prove a point. I got arrested for domestic violence years ago. I never did anything,” Foglia said.

“How do you think Jewish people feel when they see a swastika on the door?” Saeidi asked.

“Well, a lot of Jewish people ripped me off, too. Their god is money, also,” Foglia said.

Foglia claimed he would paint over the door.

“I promised to the community of Westpass and Woodland Park, A.K.A. Woodland Park, I will not do anything like this again,” he said.

The mayor of Woodland Park said they’ll continue to explore every lawful avenue to put an end to this.

Please note: This story was provided to CNN Wire by an affiliate and does not contain original CNN reporting. This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.

By Otis Livingston

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    LINDEN, New Jersey (WCBS) — John Shippen was a child of former slaves who found his way onto a golf course and made history there.

New Jersey couple Ruby and Thurman Simmons shed light on his overlooked legacy in their book “A Golf Legend.”

“I wanted to correct the injustice that was done in the game of golf,” Thurman Simmons said. “I said, I’m gonna talk about and do some research on this guy, John Shippen.”

John Shippen was born in 1879.

“His father was a minister, Presbyterian minister, and they went to minister to Shinnecock Indians,” Thurman Simmons explained.

At Shinnecock, Shippen discovered golf and, according to Simmons, he took to it really well.

“He was making clubs, giving lessons and playing in golf tournaments, and that’s how Shippen got in,” Thurman Simmons said. “He was an American, but of African descent, and the golfers did not want to play with him. They came over from Scotland and Ireland.”

At the 1896 U.S. Open, Theodore Havemeyer, the head of the golf association, insisted he play, no matter what the other golfers said or did. Shippen finished in fifth place, winning $10 in prize money. More importantly, he secure a place in history as the first Black golf professional.

By 1924, Shippen settled in as the pro at Shady Rest Golf Course in Scotch Plains New Jersey, the first Black golf club in the country.

Shippen’s family shared their genealogy, and the couple even received one of Shippen’s original well-worn putters from someone who heard they had embarked on this project.

“This is what they call a wooden shaft,” Thurman Simmons said. “And the way they kept it straight was they would put it in hot water and then kind of straighten it out because it would warp.”

Another of the goals in recognizing Shippen’s life, was to honor him in death as well. He died alone at a nursing home in Newark in 1968, and was buried in an unmarked grave in Linden.

“All they had was a number 71 in a slab of concrete that was his marker,” Thurman Simmons said.

“We put a very nice headstone on with the information, the first American, first African American, and the dates on there,” Ruby Simmons said.

Shippen was issued a PGA card in 2009, a prized essential for any pro golfer.

“I don’t feel like I did anything important other than correct a little bit of history in America that most people don’t even know about,” Thurman Simmons said. “I brought attention to it, and it got out there, yeah, and it ran by itself because it was the truth.”

Please note: This story was provided to CNN Wire by an affiliate and does not contain original CNN reporting. This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.

By Dan Raby

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    SOUTH FULTON, Georgia (WUPA) — Police in metro Atlanta are telling parents to double-check what they pack for their children after a very adult beverage was found in a student’s lunchbox.

The South Fulton Police Department shared a photo of a Cutwater Lemon Drop Martini that a child had accidentally brought to school on Wednesday.

In the picture, the canned cocktail was in the lunchbox next to a Lunchable and a packet of Doritos.

“Before you send them babies off to school… CHECK. THE. LUNCHBOX,” the police department wrote. “Because why are we getting reports of juice boxes sitting next to… Cutwater margaritas??”

“That is NOT Capri Sun. That is NOT Apple Juice. That is a whole ‘Parent had a long night’ starter pack,” the department joked.

According to Cutwater’s website, its 12-ounce canned lemon drop martini is made with real vodka and is 11% alcohol by volume.

The Facebook post quickly went viral with hundreds of commenters joining in.

“ABV is Apple Juice By Volume,” one commenter wrote.

“This is giving the child packed their own lunch,” another wrote.

While the police department acknowledged that mornings getting ready for school can be hectic, it asked parents to make sure to check their kid’s lunchbox before school resource officers spot something wrong.

Please note: This story was provided to CNN Wire by an affiliate and does not contain original CNN reporting. This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.