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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.

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

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.

When "bobcat" trended on Twitter this week, no one anticipated the unreal series of events they were about to witness. The bizarre bobcat encounter was captured on a security cam video and...well...you just have to see it. (Read the following description if you want to be prepared, or skip down to the video if you want to be surprised. I promise, it's a wild ride either way.)

In a North Carolina neighborhood that looks like a present-day Pleasantville, a man carries a cup of coffee and a plate of brownies out to his car. "Good mornin!" he calls cheerfully to a neighbor jogging by. As he sets his coffee cup on the hood of the car, he says, "I need to wash my car." Well, shucks. His wife enters the camera frame on the other side of the car.

So far, it's just about the most classic modern Americana scene imaginable. And then...

A horrifying "rrrrawwwww!" Blood-curdling screaming. Running. Panic. The man abandons the brownies, races to his wife's side of the car, then emerges with an animal in his hands. He holds the creature up like Rafiki holding up Simba, then yells in its face, "Oh my god! It's a bobcat! Oh my god!"

Then he hucks the bobcat across the yard with all his might.

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Images courtesy of John Scully, Walden University, Ingrid Scully
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Since March of 2020, over 29 million Americans have been diagnosed with COVID-19, according to the CDC. Over 540,000 have died in the United States as this unprecedented pandemic has swept the globe. And yet, by the end of 2020, it looked like science was winning: vaccines had been developed.

In celebration of the power of science we spoke to three people: an individual, a medical provider, and a vaccine scientist about how vaccines have impacted them throughout their lives. Here are their answers:

John Scully, 79, resident of Florida

Photo courtesy of John Scully

When John Scully was born, America was in the midst of an epidemic: tens of thousands of children in the United States were falling ill with paralytic poliomyelitis — otherwise known as polio, a disease that attacks the central nervous system and often leaves its victims partially or fully paralyzed.

"As kids, we were all afraid of getting polio," he says, "because if you got polio, you could end up in the dreaded iron lung and we were all terrified of those." Iron lungs were respirators that enclosed most of a person's body; people with severe cases often would end up in these respirators as they fought for their lives.

John remembers going to see matinee showings of cowboy movies on Saturdays and, before the movie, shorts would run. "Usually they showed the news," he says, "but I just remember seeing this one clip warning us about polio and it just showed all these kids in iron lungs." If kids survived the iron lung, they'd often come back to school on crutches, in leg braces, or in wheelchairs.

"We all tried to be really careful in the summer — or, as we called it back then, 'polio season,''" John says. This was because every year around Memorial Day, major outbreaks would begin to emerge and they'd spike sometime around August. People weren't really sure how the disease spread at the time, but many believed it traveled through the water. There was no cure — and every child was susceptible to getting sick with it.

"We couldn't swim in hot weather," he remembers, "and the municipal outdoor pool would close down in August."

Then, in 1954 clinical trials began for Dr. Jonas Salk's vaccine against polio and within a year, his vaccine was announced safe. "I got that vaccine at school," John says. Within two years, U.S. polio cases had dropped 85-95 percent — even before a second vaccine was developed by Dr. Albert Sabin in the 1960s. "I remember how much better things got after the vaccines came out. They changed everything," John says.

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