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Their sons' disease has 4 families racing the clock to get a promising experimental drug approved.

They're gathering signatures and sharing their story to help pressure the FDA to hurry up.

This is a powerful film about four families banding together to overcome a medical monster.

"To the Edge of the Sky" is a moving and hopeful story told by documentary filmmakers Todd Wider and Jedd Wider about Duchenne muscular dystrophy (DMD) and about families on a mission to save their sons.

They're out to save their sons from one deadly form of muscular dystrophy.

When it first takes hold, Duchenne muscular dystrophy takes away its victims' ability to walk. It's also typically fatal — most boys die around the age of 19. The Lefflers, Secklers, Mcnarys, and McSherrys are families whose sons are afflicted, and late-teenhood is fast approaching.


And now, a new, experimental drug is offering them real hope for the first time.

The drug is Eteplirsen, and it may slow or even stop the advance of DMD. And that promise is what's firing up the four families.

The Mcnary family's story paints a vivid picture of what's at stake.

Jenn Mcnary's boys, Austin and Max Leclare, have DMD, but only one of them got the new drug.

Austin's DMD was too advanced for the study. So Max is running around and stable, and Austin's in a wheelchair while his disease continues to progress. "I could have the first child in history to survive this disease, and I could have the last kid to die from it living in the same house," Jenn Mcnary says.

"I could have the first child in history to survive this disease, and I could have the last kid to die from it living in the same house." — Jenn Mcnary

Eteplirsen may or may not be the answer.

It's hard to tell at this point, and other new approaches are seeing some positive results. But what parent wouldn't be ready to move sun and earth, like these families, to grab at a chance like this if it could mean saving a beloved child?

Not every child with DMD can get this drug.

It's not approved for use yet.

The reason kids with advanced DMD like Austin are being kept out of studies is most likely to avoid affecting the study's success rate. That would hurt the drug's chance of being approved.

Manufacturers are allowed to provide it to patients on compassionate grounds, but why just Austin and not all the other boys everywhere who have DMD? Hm.

So the best strategy for everyone is to get Eteplirsen approved, ASAP, so more DMD patients can take it.

The families have come together to lobby the FDA for fast-track approval.

They've also delivered a petition with 100,000 signatures of support to the White House.

The "To the Edge of the Sky" film is part of the plan as a means of raising awareness. The filmmakers are looking for help financing the completion of the film, and have a Kickstarter campaign people can contribute to.

Here's the Kickstarter campaign video. It's an emotional roller coaster.

Joy

Homeless man catches family's two children and dogs dropped from burning apartment building

"He was right underneath and he was like 'Yes, throw your daughters out, I'm going to catch them, I'm going to get them.'"

Man catches entire family as they jump from burning building.

House fires are devastating for families. In a matter of minutes, you could lose all of your belongings and a place to live, or worse, you could lose loved ones. A family in Phoenix, Arizona, recently found themselves facing the reality of their own home in flames. Claudia Jimenez told CBS News that she woke up trapped in her burning apartment with her two daughters, with nothing to do but yell for help in the hopes that someone would hear her.

The mom's screams were answered by Joe Hollins, a homeless man who was camping nearby with his wife. Hollins didn't hesitate to try to find a way to help. With no way out and the fire department still nowhere on the scene, Jimenez had to trust the stranger who was standing below.

"He was right underneath and he was like 'Yes, throw your daughters out, I'm going to catch them, I'm going to get them,'" Jimenez told CBS.

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Family

Pediatrician shares two simple tips that could save a child's life at a pool party

"The more folks present, the safer the pool is, right? Wrong."

Photo by Ash Dowie on Unsplash

If there's a body of water anywhere, a designated adult needs to have their eyes on it.

It's that time of year when the weather across the country is warm enough for families to enjoy outdoor barbecues, picnics and pool parties. That means it's also the time of year when tragedy will strike a certain percentage of families who get blindsided by how quickly and easily a child can drown in a backyard pool, even when they're surrounded by people who care about them and their safety.

We've all been at a gathering where adults are coming and going, chatting, setting up food, taking trips to the bathroom, all while kids are busy playing in the water. In such scenarios, it's easy to assume that someone else is keeping an eye on the pool.

But as pediatrician Diane Arnaout has shared, the harrowing reality is that the more people there are at a pool party the more likely it is that a child could slip into the pool or become distressed in the water without anyone noticing.

In a Facebook post that has been shared more than 77,000 times, Dr. Arnaout wrote:

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Joy

Sorry, Labradors. After 31 years, America has a new favorite dog.

The American Kennel Club has crowned a new favorite.

via Pixabay

A sad-looking Labrador Retriever

The sweet-faced, loveable Labrador Retriever is no longer America’s favorite dog breed. The breed best known for having a heart of gold has been replaced by the smaller, more urban-friendly French Bulldog.

According to the American Kennel Club, for the past 31 years, the Labrador Retriever was America’s favorite dog, but it was eclipsed in 2022 by the Frenchie. The rankings are based on nearly 716,500 dogs newly registered in 2022, of which about 1 in 7 were Frenchies. Around 108,000 French Bulldogs were recorded in the U.S. in 2022, surpassing Labrador Retrievers by over 21,000.

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Pop Culture

Musician uses traditional Chinese instrument to create hypnotic cover of 'Hotel California'

There are literally hundreds of covers of this song floating around on the internet, but this one has its own unique flair.

Moyun/Youtube

Moyun peforms "Hotel California" on the guzheng.

The Eagles' hit song, “Hotel California,” has been covered countless times over the years by a variety of artists, including the likes of Nancy Sinatra, the Gypsy Kings and that guy at your local karaoke spot.

And while every rendition gives the song a fresh dynamic, one musician with a penchant for mystery has transformed the rock n’ roll staple into something entirely new.

Using a traditional Chinese string instrument called a guzheng, Moyun plays the song focusing mostly on its two guitar solo arrangements, creating a sound that has all the otherworldly beauty of an ancient folk tale.
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Pop Culture

Man rewatches shows from his childhood and his recaps of the bonkers storylines are priceless

Rob Anderson's hilarious recaps of shows like "Mighty Ducks," "Beethoven," and "7th Heaven" might make you wonder how they got made in the first place.

@hearthrobert/TikTok

These plots makes zero sense.

While there are no doubt some timeless classics from our childhood that remain every bit as amazing as we remember, many are straight-up cringey upon a later viewing. Really, it’s to be expected as societal viewpoints change…sort of a marker of how far we’ve collectively come.

And so, what do we do with these problematic pieces of old-school pop culture? Well, we can certainly update them to better reflect a more modern attitude, but that also comes with a set of potential problems. Or we could simply never watch them again. Certainly an option given all the content out there. But then we might miss an opportunity to better understand what seemed to work for the mainstream then, and why it doesn’t work now.

And then there’s the third option—allow ourselves to be entertained by their cringiness.

That’s certainly the route taken by Rob Anderson. Over on TikTok, Anderson has taken ultra-popular movies and television shows from his childhood and given them hilarious recaps capturing how absurd some of the storylines are.
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Joy

Woman decides that she is the love of her life and marries herself at her retirement home

“I said, you know what, I’ve done everything else. Why not?”

77-year-old woman decides she's the love of her life and marries herself.

We joke about marrying ourselves or a platonic friend if some arbitrary amount of time has passed without a proposal from an imaginary suitor. And sure, some people do wind up marrying a friend in more of a business arrangement, but it's not very common that someone follows through with marrying themselves.

Dorothy "Dottie" Fideli, decided that she was going to break the mold. The 77-year-old sat down and thought about all of the things she had done in life and who was with her the entire time cheering her on. It was an easy answer: herself. She was her biggest cheerleader, the person who always showed up and the love of her life, so Fideli made the plan to marry herself.

On a beautiful May day, friends and family gathered in the O’Bannon Terrace Retirement Community, where Fideli is a resident, to witness the ceremony.

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