+
upworthy
More

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.

Pop Culture

Here’s a paycheck for a McDonald’s worker. And here's my jaw dropping to the floor.

So we've all heard the numbers, but what does that mean in reality? Here's one year's wages — yes, *full-time* wages. Woo.

Making a little over 10,000 for a yearly salary.


I've written tons of things about minimum wage, backed up by fact-checkers and economists and scholarly studies. All of them point to raising the minimum wage as a solution to lifting people out of poverty and getting folks off of public assistance. It's slowly happening, and there's much more to be done.

But when it comes right down to it, where the rubber meets the road is what it means for everyday workers who have to live with those wages. I honestly don't know how they do it.

Keep ReadingShow less
Joy

5-star Scottish resort offers whimsical afternoon tea experience with 'naughty sheep'

Cameron House's Woolly Wellness retreat includes tea in the garden with adorably rude guests.

Cameron House/Naughty Sheep

Cameron House's Woolly Wellness retreat includes a unique sheep encounter.

Remember when "goat yoga" was all the rage? And then "cow cuddling" and "turkey cuddling" made everyone's bucket lists?

Now we can add "nuzzling with naughty sheep" to the mix, but with a fancy Scottish twist.

Less than an hour from Glasgow, Scotland, the Cameron House resort sits on the bonnie banks of Loch Lomond, looking as if it were plucked straight out of a fairy tale. Sprawling green grounds, gorgeous lake views and a four-story castled mansion greet guests as their "home away from home" (only better), and a perusal of the reviews show guests raving about the 5-star resort's elegance, beauty and exceptional service.

I mean, just look at this place:

drone view of cameron house grounds and lakeCameron House sit on Lake Lochmond in Scotland.Cameron House


Keep ReadingShow less

A pitbull stares at the window, looking for the mailman.


Dogs are naturally driven by a sense of purpose and a need for belonging, which are all part of their instinctual pack behavior. When a dog has a job to do, it taps into its needs for structure, purpose, and the feeling of contributing to its pack, which in a domestic setting translates to its human family.

But let’s be honest: In a traditional domestic setting, dogs have fewer chores they can do as they would on a farm or as part of a rescue unit. A doggy mom in Vancouver Island, Canada had fun with her dog’s purposeful uselessness by sharing the 5 “chores” her pitbull-Lab mix does around the house.

Keep ReadingShow less
@caitlin.the.realtor/TikTok, used with permission

Wait, so 90's fashion is in, but 90's hair is out?

Every era has its own version of what’s attractive. And very rarely does that aesthetic hold power with the following generation. In fact, it often becomes the opposite of cool.

Just think of Elvis. He might have been a universal sex symbol for a time, but it also wasn’t long before his pompadour became passé. Same goes for Paul Newman’s rugged manliness, David Cassidy’s babyface, Tom Selleck’s mustache. Indeed, for everything a season.

Which brings us to the 90s. The age of beach blonde surfer boys (real surfing skills not required, but a plus). Of flannel, lots of flannel, and super chiseled bodies. Let’s not forget this was the dawning of the term “metrosexual,” and also the time period that brought us that Calvin Klein ad with Mark Wahlburg.

How exactly would these guys measure up with the Gen Z kids today?

Keep ReadingShow less
popular

A wild Eurasian crow befriended a toddler and won't leave his side

Crows are so much smarter than we think.

A Eurasian crow.

A family from Denmark has created a touching video montage documenting their unique friendship with a wild Eurasian crow. This crow, affectionately named Russell, has become an honorary member of their household, forming special bonds with each family member, including the pets.

However, the crow's relationship with their son, 2-year-old Otto, is truly extraordinary. “They could spend hours just playing,” Otto’s mother, Laerke Luna, says in a video shared by The Dodo. "When Otto is outside, he will never leave Otto’s side.”

Russell, the free-spirited crow, ventures away from the family's home from time to time, but never for too long. He always comes back and announces his return by tapping on the door, swooping in to lounge on the sofa, or awaiting Otto's return from school atop their roof.

“When we are inside, he will sit inside the window because he wants Otto to go outside with him,” Laerke said.

The family’s relationship with Russell didn’t come out of nowhere. When Russell was a young bird, he had health problems so the family took him and nursed the bird back to health. Eventually, they witnessed his first attempts to fly.

Recently, Russell became friends with another family member, their second child, Hedwig. Although he does get a little annoyed with the bird’s frequent attempts to nab his pacifier.

Even though it’s rare for humans to strike up such a close bond with a crow, according to research, it’s not that surprising. Audubon says that crows are “some of the smartest animals in the world” with an intelligence “on par with chimpanzees.” They are also very social and family-oriented, so no wonder Russell loves Otto and his family.

Crow Named Russell Waits For His Favorite Kid To Get Home From School | The Dodo


Learning

Why you shouldn't throw your dishwasher pod into the bottom of your dishwasher

Dishwashers actually use the dirty water to know how to wash your dishes.

Photos by cottonbro studio and PhotoMIX Ltd. via Canva

Why your detergent shouldn't go in the bottom of the dishwasher

There always seem to be something going on with the pods and powders you're supposed to use in the dishwasher to clean your dishes. Either the pods don't dissolve completely or the powder gets all goopy and hard, never really fully dispensing into the dishwasher.

The inconsistency in product dispensing can leave you wondering if the dishes are even getting cleaned, causing some to toss the detergent pod into the bottom of the dishwasher. It would seem that placing the detergent at the bottom would allow for it to actually reach your dirty dishes. But Melissa Pateras, a domestic expert, explains that doing it that way isn't doing what you think it's doing.

Pateras actually breaks down exactly how dishwashers work to clean your dishes while explaining why putting the detergent on the bottom is ineffective.

Keep ReadingShow less