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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.

Culture

People from other countries share 14 things that instantly tell them someone's American

Have you ever heard of the "American lean"?

via zoetnet/Flickr, Ewen Roberts/Flickr and Tom Hodgkinson/Flickr
Some American tourists enjoying the sights

Americans have a style and personality all their own, which isn’t a bad thing. It’s just noticeable when they travel aboard. Americans often stand out because of their outgoing personalities. They are friendly and enjoy having casual conversations with strangers.

This is an endearing trait to a lot of people in more reserved cultures, although it can also come off as a little brash.

An American characteristic that isn’t quite endearing to people in other countries is that they can be rather loud. In Europe, one can always notice the Americans in the restaurant because they can be heard from across the room.

One Reddit user wanted to know the specific ways that Americans stand out when traveling abroad, so they asked the AskReddit subreddit: “What’s an obvious sign that someone is an American?”


 american tourists, american culture, americans abroad, americans, USA, tourists, travel, europe, culture It may not be quite this obvious, but Americans do stand out.  Giphy  

The post was popular, receiving nearly 6,000 responses in just 6 days. The most popular ones described how Americans' unique personalities, style of dress, dental hygiene and body language make them easy to spot.

Here are 14 “obvious” signs that someone is an American.

1. Posture

 american tourists, american culture, americans abroad, americans, USA, tourists, travel, europe, culture Americans slouch and lean.  Giphy  

"Apparently, the CIA trains American agents to not lean on things if they go undercover in foreign countries because Americans lean on anything they can while standing around," one user wrote.

"I bet MI6 trains British agents to lean on everything if they go undercover in America because Americans lean on anything they can while standing around," joked another.

Shockingly, this is actually true. The "American lean" is well-documented and, yes, a former CIA chief has said publicly that it's something the agency addresses with its operatives to help them blend in.

2. The date

"MMDDYYYY," a user said.

The way Americans write the date seems normal and commonplace when you're in the US, but around the world, we're practically the only ones who do it that way. Similarly, only a small handful of countries outside of the US use the imperial system of measure.

Writing the date or using feet and inches are a dead giveaway!

3. Distances are different

"Anything under 4 hours is 'close by," someone suggested.

"Everything in Europe is around the corner if you're from the US. I can drive the whole day and not leave my state, but in Europe, I can pass through 4 countries in that same time frame," said another.

The massive geography of the United States has a big affect on how we see distance. It shows up when we travel to other countries that are more densely packed together.

4. They're polite to servers

"In the touristy cafe-restaurant I worked at:

If they asked me for the nicest spot we had

If they asked me my recommendation without seeing the menu first

I would walk to the table, and they would say right away ‘hey, how are you doing?’ This one threw me off a lot at first. Why is this person asking me how I'm doing?? I'm just there to take the order. I got used to it, and I think they found my awkwardness cute.

They would ask my name when I greeted them and took their order.

I'm Northern European.," explained one user.

"It’s under-appreciated just how polite, friendly, and sincere Americans are in general. It blew my mind the first time I came to the US, and I love that my children are growing up with those same values," said another.

You might expect to hear that Americans are rude and entitled when traveling, but that's not necessarily the case! In America, some friendly rapport with your waiter is expected, and Americans tend to be a more outgoing bunch that love to engage. That makes them stand out in European countries, in particular, where restaurant service is meant to be professional and efficient rather than charismatic.


5. The water bottles

 american tourists, american culture, americans abroad, americans, USA, tourists, travel, europe, culture Americans love huge water bottles.  Giphy  

"I was told, 'Americans carry water bottles around like they're worried they'll never have access to clean water ever again," one user said.

"I don't care what anyone says. If you think carrying a water bottle when walking a lot is weird, you're probably slightly dehydrated all the time and are just desensitized to it. You seriously need to drink water frequently if you want to be ideally healthy," said another.

The water bottle fad is uniquely American, for better or worse. Whether it's a Yeti, a Stanley, an Owalla, or something else, you can bet if someone is swinging a massive water bottle wherever they walk, they're an American.

6. Smiling

"I was in Germany this past summer, and I realized smiling at everyone you make eye contact with is very American. When I went to London on the same trip, they seemed less weirded out by it but would awkwardly return the smile. I was taught to always start with a disarming smile. Never realized it was American," said one person.

7. "More ice, please."

 american tourists, american culture, americans abroad, americans, USA, tourists, travel, europe, culture Americans love tons of ice in their drinks.  Giphy  

"I spent a year in Europe completely iceless to the point I forgot that was a thing. I stopped at a bar in Chicago fresh off the plane and not only did I get free tap water, but water with ice. I instantly felt at home," added one person.

There is a long and fascinating history involving someone called "The Ice King" behind why Americans, and so few other cultures, love to put tons of ice in our drinks. Needless to say, it makes us stand out like a sore thumb when traveling.

8. Personal space

"As an American man, I’ve been told repeatedly by European and Asian friends that we simply take up space (not by being fat) as though we’re entitled to it. Men in other countries apparently don’t claim the same personal space we do," one person offered.

You mean manspreading? Apparently, other cultures don't do that.

9. White teeth

 american tourists, american culture, americans abroad, americans, USA, tourists, travel, europe, culture Americans value ultra-white teeth.  Giphy  

"It’s even more bizarre that they assume we have braces or bleach our teeth because they’re straight and white. I have naturally straight white teeth. I brush them twice a day so they stay white. I don’t do anything special to them, but I remember being in London and some similar-aged students literally making fun of me for my teeth… it’s true that they don’t naturally look like headstones in an ancient graveyard, but there’s no need to make fun," someone added.

Imagine getting made fun of for having white teeth! For one reason or another, American culture places high value on having extremely white teeth. We all know the old jokes about British teeth, but some findings show that while Americans' teeth may be whiter, Brits may be healthier overall. Something to think about.

10. Casual dress

"My friend went to Germany recently, and what people said about Americans is you can spot them a mile away because they’re the ones wearing pajamas in public. Apparently, in other countries, at least Germany, they dress a little more formally and in less baggy clothes than we do in America," someone added.

Activewear, sweatpants, pajamas — we love to be comfortable! But it does make us a bit obvious when we're out and about in other countries.

11. Baseball hats

 american tourists, american culture, americans abroad, americans, USA, tourists, travel, europe, culture Americans wear hats... everywhere.  Giphy  

"Baseball cap... even on an infant riding in a pram," a user suggested.

Baseball hats are common in many countries around the world, but most people internationally only wear them outside. If someone's wearing a cap inside or at a restaurant, it's a safe bet that person is American.

12. Shoes

"Americans are shoe snobs (they don’t think they are, but they are). Setting aside wealthier business types, Americans generally wear more on-brand, on-trend, high-quality shoes than others," someone said.

13. They're loud

 american tourists, american culture, americans abroad, americans, USA, tourists, travel, europe, culture Americans' default volume is loud.  Giphy  

"That was my first thought. Americans yell at each other in normal conversation in public. I noticed it years ago in Europe, and now I can’t stand it in the US," another user added.

Now there's an unsurprising revelation! Just like our tendency to take up space, Americans seem to have less awareness of those around them when it comes to conversation volume, as well.

14. Occupation matters

"Immediately asking someone what they do for a living when meeting them. Our jobs and work are our entire identity," one person said.

"I hate that about American culture. I'm an American and recently became a SAHM, so I don't have an answer to 'What do you do for a living?' Half the time, I add the caveat, ‘Oh, my last job was with Apple,’ so that I'm not written off as an unemployed ‘loser.’ But it really is dumb to determine a person's worth by what they do in order to afford food and shelter," added another.

There are huge differences in work culture between America and other countries. They're so big and pervasive that they show up not just while we're working, but in the way we interact with others. For example, in Europe it's far less common to be friends with your coworkers. People value the purpose they find in work and the results, but are happy to keep the majority of their life separate from their career.

This article originally appeared last year. It has been updated.

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Science

Weather reporter shares 'forced convection' hack that'll cool your hot car faster than A/C

You may look a little funny, but it beats sweating in your seat.

via Canva/Photos

A woman in a hot car.

It’s remarkable how, when it gets a little warm outside in the summer, the interior of your car can become a blazing inferno. A big reason for the discrepancy between the outside air temperature and the interior of your car is the same reason the planet is getting warmer: the greenhouse effect.

When you close your car windows and it's warm outside, the heat can’t escape because longwave radiation can’t pass through windows as easily as shortwave radiation. That’s why temperatures can go from comfortably cool when you get out of your car to blazing within minutes.

In fact, if it’s 80 degrees outside, it only takes 10 minutes for the car’s inside temperature to rise to 99 degrees and an additional hour to reach 137 degrees. That’s why it’s important never to leave your pet in the inside of your car, even when it feels cool outside.

 hot car, cool car, man with fan, summer car, summer heat, sweating, A man in a hot car.via Canva/Photos

How to cool a hot car in the summer

So, how do you cool your car down when it feels like a volcano inside in the middle of summer? Victoria Fenn Alvarado, a reporter with Canada’s The Weather Network, shared a science-based hack to cool your car even faster than blasting the air conditioner. First, you open the passenger-side window down. Then you open the driver's side door and step outside of the car. "Open and close the door paridly, about seven to 10 times. Once you complete his step, you can step inside your vehicle, and now you can drive away comfortably," Alvardo said.

It may look unusual to others in the parking lot to see you using your car door like a massive fan, but the hack is effective because it utilizes forced convection to replace the hot air with cool, fresh air. “Opening and closing the door acts as a pump, allowing warm air to exit rapidly. Paired with having the window open on the other side, this motion creates a pressure drop inside the vehicle, pulling in outside air, essentially replacing the warm air with fresh air,” Alvarado continues.

Hannah Fry further explained the phenomenon in a viral TikTok video. Fry is Professor of the Public Understanding of Mathematics at the University of Cambridge and the host of numerous popular podcasts and television shows.

How to cool your hot car using forced convection

@fryrsquared

That age-old dilemma of choosing between having a non-sweltering car or baffling a passerby because you look like a fool who doesn't know how to use a door


“The reason why it works is that when you open and close the door, especially if you do it quickly, the door, as it's moving outwards, it sweeps out all of the air that's in its way, creating this sort of area of low pressure that you get here,” Fry said. “And then that sets up something called bulk flow, which is where all of the hot, sweaty, horrible air inside the car is drawn outwards.”

The hack is one of the strange things that seems obvious, but most people probably haven’t considered. However, once you see it in action, it’s impossible not to think: Why didn’t I think of that? Here’s to enjoying the rest of your summers, knowing that even if it gets a bit warm outside, you always have a cool car to look forward to.

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Joy

Dad shares the hilarious conversations he has with 5-year-old daughter and folks are cracking up

"Why do people congratulate you when Mom is making the baby?

via James Breakwell/X

All parents have had similar convos with thier kiddos.

Raising kids is tough, but there's a lot of laughs along the way. Especially when actual conversations start, as kids begin trying to make sense out of the world around them, ask questions, and test mommy and daddy's resolve.

Back in 2018, comedy writer and children's book author James Breakwell, with four daughters who were all under the age of eight at the time, shared their hilarious conversations on X. From these tweets, it looks like comedy runs in the family. Here's a sampling of some Breakwell's funniest kid-inspired tweets.

 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 

While Breakwell's 7-year-old wasn't as heavily featured, when she was quoted, the sarcasm was palpable. Which makes sense, considering that kiddos begin understanding this mechanism around that age.

 


 


 


 


 


 


 


 


 


 


 


 


 

Kids really do say the darnedest things, and we love them for it. It one of the many, many ways then bring so much joy to the world. It almost makes up for the headaches and sleepless nights, doesn't it.

This article originally appeared seven years ago.

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Love Stories

Poet Andrea Gibson reads 'Love Letter From the Afterlife' to fiancée just months before dying

"Dying is the opposite of leaving."

en.m.wikipedia.org

A photo of poet Andrea Gibson.

For Andrea Gibson, life was a poem—a beautifully complex spectrum of gender, time, and life itself. Gibson (who used they/them pronouns) was a poet, an activist, a filmmaker, a friend—but most of all—an inspiration to anyone on this planet who dares to push back against the societal constructs which are woven into us at such an early age.

Comedian Tig Notaro sat down with them for Interview Magazine in which Gibson shone through as being equally thoughtful and hilarious. After describing themselves as "gender queer," they elaborated: "It just means that I don’t necessarily identify within a gender binary. I’ve never in my life really felt like a woman and I’ve certainly never felt like a man. I look at gender on a spectrum and I feel somewhere on that spectrum that’s not landing on either side of that."

Their work encouraged many, and in 2023, Colorado Governor Jared Polis awarded Gibson Colorado's Poet Laureate. That same year, Gibson shared the poem inspired by their grandmother, Love Letter from the Afterlife, which they had written to comfort those who were grieving. To try to find a semblance of beauty in the pain of loss and to reassure all of us facing mortality that there is… more.

For the past four years, Gibson has battled ovarian cancer, and much of that fight was captured in the upcoming documentary (co-produced by Notaro) Come See Me in the Good Light. Heartbreakingly, Gibson lost the battle just this week. Exemplifying the love that surrounded them, their death announcement read in part: “Andrea Gibson died in their home (in Boulder, Colorado) surrounded by their wife, Meg, four ex-girlfriends, their mother and father, dozens of friends, and their three beloved dogs.”

But Gibson, ever the romantic, wanted their beloved Megan Falley, to personally and intimately receive the words of the poem. And in a final television interview—just months before they passed—Gibson read it to her.

  Andrea Gibson reads their poem.   www.youtube.com  

 
“My love, I was so wrong. Dying is the opposite of leaving. When I left my body, I did not go away. That portal of light was not a portal to elsewhere, but a portal to here. I am more here than I ever was before. I am more with you than I ever could have imagined. So close you look past me when wondering where I am.
 
 
It’s OK. I know that to be human is to be farsighted. But feel me now, walking the chambers of your heart, pressing my palms to the soft walls of your living. Why did no one tell us that to die is to be reincarnated in those we love while they are still alive? Ask me the altitude of heaven, and I will answer, “How tall are you?” In my back pocket is a love note with every word you wish you’d said. At night I sit ecstatic at the loom weaving forgiveness into our worldly regrets. All day I listen to the radio of your memories.
 
 
Yes, I know every secret you thought too dark to tell me, and love you more for everything you feared might make me love you less. When you cry, I guide your tears toward the garden of kisses I once planted on your cheek, so you know they are all perennials. Forgive me, for not being able to weep with you. One day you will understand. One day you will know why I read the poetry of your grief to those waiting to be born, and they are all the more excited.
 
 
There is nothing I want for now that we are so close I open the curtain of your eyelids with my own smile every morning. I wish you could see the beauty your spirit is right now making of your pain, your deep-seated fears playing musical chairs, laughing about how real they are not. My love, I want to sing it through the rafters of your bones, Dying is the opposite of leaving. I want to echo it through the corridor of your temples, I am more with you than I ever was before.
 
 
Do you understand? It was me who beckoned the stranger who caught you in her arms when you forgot not to order for two at the coffee shop. It was me who was up all night gathering sunflowers into your chest the last day you feared you would never again wake up feeling lighthearted. I know it’s hard to believe, but I promise it’s the truth. I promise one day you will say it too— I can’t believe I ever thought I could lose you.”

The comment section on YouTube reflects some of the better parts of humanity, which Gibson no doubt inspired. One person writes, "I see the news that someone I never met in person has died, and it knocks the breath out of me and leaves me weeping. Your light, your depth, your words have touched my soul. Your poetry has been the portal to a connection to you that makes our never having met in person meaningless. I love you, Andrea. Thank you for everything."

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Science

Baffled scientists discover 69-year-old woman from Guadeloupe has an entirely new blood type

Her blood rejected every known donor type.

Photo credit: Canva

Woman discovered to have an entirely new blood type baffling scientists

Getting bloodwork done is a very routine part of a medical examination, especially after reaching your 30s. Doctors use the information from your blood to decipher your overall health. Before surgeries or hospital stays, doctors also use your bloodwork to determine which blood type you have in the event of an emergency which may require a blood transfusion. Due to how our bodies respond to the wrong blood type being introduced in our bloodstream, it's imperative that doctors have the right blood type on hand during surgery.

It was this routine bloodwork before a surgical procedure that thrust an unnamed woman at the center of scientific discovery. The woman went in for a pre-surgery appointment where her blood was drawn to prepare for the procedure but something peculiar happened during the typing of her blood. No matter what blood type doctors mixed with in, her blood rejected it. The blood type of most people are positive or negative A, B, AB or O. Typically AB- is the blood type that is considered most rare but this woman has got that blood type beat.

 blood type; blood donation; new blood type; Island of Guadeloupe; woman new blood type Blood bags ready for life-saving transfusions.Photo credit: Canva

The 69-year-old woman was first discovered in 2011 but due to limited DNA technology at the time researchers were unable to identify her blood type. It wasn't until 2019 when they were able to do complete DNA sequences of her blood discovering that she has PIGZ Gene, a mutated gene that changes how protein bonds to red blood cells according to 10 News in Australia.

The woman from Guadeloupe, a French Caribbean island, isn't the only person with a blood type outside of the main eight types. There are actually 48 blood types in the world but the majority of people fit into one of the well known types. But when it comes to the woman of Guadeloupe, she's the first and only person with her blood type, which has now been named after the island in which she hails–GWADA NEGATIVE.

 blood type; blood donation; new blood type; Island of Guadeloupe; woman new blood type Patching up with love: Hands joined, hearts on sleeves.Photo credit: Canva

Since the unnamed woman is the only person with her blood type, she's only compatible with herself. Meaning that if she were to need a blood transfusion, she would need to be her own donor which can make things a little tricky. How exactly would she donate to herself if her blood is only compatible with itself? It would seem that in order to make sure there was blood available for the woman in the event of an emergency would be for the local hospital to ask her to donate her own blood. Logically, this seems to be the only thing that would make sense.

Hospitals keep a fairly large supply of donated blood to use during blood loss emergencies caused by accidents, gun or knife wounds and surgeries. That means they realistically should be able to stockpile and store her blood in the event that she would ever need a blood donation. It's unclear if that is something that the hospital has done or is considering. The woman does not want to be identified so there's no way to find out from her directly and hospitals have HIPAA protocols that would prohibit discussion on what they have decided.

Either way, the discovery raises questions about what happens in the future. Will they keep her blood to experiment and type other people who have the same mutation? Will they always need it stockpiled? Will researchers begin looking for more people with this one of a kind blood type? So many questions and no real way to have them answered.

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