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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.

Photo by Tim Mossholder on Unsplash
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Glenda moved to Houston from Ohio just before the pandemic hit. She didn't know that COVID-19-related delays would make it difficult to get her Texas driver's license and apply for unemployment benefits. She quickly found herself in an impossible situation — stranded in a strange place without money for food, gas, or a job to provide what she needed.

Alone, hungry, and scared, Glenda dialed 2-1-1 for help. The person on the other end of the line directed her to the Houston-based nonprofit Bread of Life, founded by St. John's United Methodist pastors Rudy and Juanita Rasmus.

For nearly 30 years, Bread of Life has been at the forefront of HIV/AIDS prevention, eliminating food insecurity, providing permanent housing to formerly homeless individuals and disaster relief.

Glenda sat in her car for 20 minutes outside of the building, trying to muster up the courage to get out and ask for help. She'd never been in this situation before, and she was terrified.

When she finally got out, she encountered Eva Thibaudeau, who happened to be walking down the street at the exact same time. Thibaudeau is the CEO of Temenos CDC, a nonprofit multi-unit housing development also founded by the Rasmuses, with a mission to serve Midtown Houston's homeless population.

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The English language is constantly evolving, and the faster the world changes, the faster our vocabulary changes. Some of us grew up in an age when a "wireless router" would have been assumed to be a power tool, not a way to get your laptop (which wasn't a thing when I was a kid) connected to the internet (which also wasn't a thing when I was a kid, at least not in people's homes).

It's interesting to step back and look at how much has changed just in our own lifetimes, which is why Merriam-Webster's Time Traveler tool is so fun to play with. All you do is choose a year, and it tells you what words first appeared in print that year.

For my birth year, the words "adult-onset diabetes," "playdate," and "ATM" showed up in print for the first time, and yes, that makes me feel ridiculously old.

It's also fun to plug in the years of different people's births to see how their generational differences might impact their perspectives. For example, let's take the birth years of the oldest and youngest members of Congress:

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Photo by Tim Mossholder on Unsplash
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Glenda moved to Houston from Ohio just before the pandemic hit. She didn't know that COVID-19-related delays would make it difficult to get her Texas driver's license and apply for unemployment benefits. She quickly found herself in an impossible situation — stranded in a strange place without money for food, gas, or a job to provide what she needed.

Alone, hungry, and scared, Glenda dialed 2-1-1 for help. The person on the other end of the line directed her to the Houston-based nonprofit Bread of Life, founded by St. John's United Methodist pastors Rudy and Juanita Rasmus.

For nearly 30 years, Bread of Life has been at the forefront of HIV/AIDS prevention, eliminating food insecurity, providing permanent housing to formerly homeless individuals and disaster relief.

Glenda sat in her car for 20 minutes outside of the building, trying to muster up the courage to get out and ask for help. She'd never been in this situation before, and she was terrified.

When she finally got out, she encountered Eva Thibaudeau, who happened to be walking down the street at the exact same time. Thibaudeau is the CEO of Temenos CDC, a nonprofit multi-unit housing development also founded by the Rasmuses, with a mission to serve Midtown Houston's homeless population.

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Pete Buttigieg is having a moment. The former mayor of South Bend, Indiana keeps trending on social media for his incredibly eloquent explanations of issues—so much so that L.A. Times columnist Mary McNamara has dubbed him "Slayer Pete," who excels in "the five-minute, remote-feed evisceration." From his old-but-newly-viral explanation of late-term abortion to his calm calling out of Mike Pence's hypocrisy, Buttigieg is making a name for himself as Biden's "secret weapon" and "rhetorical assassin."

And now he's done it again, this time taking on the 'originalist' view of the Constitution.

Constitutional originalists contend that the original meaning of the words the drafters of the Constitution used and their intention at the time they wrote it are what should guide interpretation of the law. On the flip side are people who see the Constitution as a living document, meant to adapt to the times. These are certainly not the only two interpretive options and there is much debate to be had as to the merits of various approaches, but since SCOTUS nominee Amy Coney Barrett is an originalist, that view is currently part of the public discourse.

Buttigieg explained the problem with originalism in a segment on MSNBC, speaking from what McNamara jokingly called his "irritatingly immaculate kitchen." And in his usual fashion, he totally nails it. After explaining that he sees "a pathway to judicial activism cloaked in judicial humility" in Coney Barrett's descriptions of herself, he followed up with:

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The current COVID-19 "strategy" from the White House appears to be to push for theoretical "herd immunity" by letting the virus spread among the young and healthy population while protecting the elderly and immunocompromised until a certain (genuinely unknown) threshold is reached. Despite many infectious disease experts and some of the world's largest medical institutions decrying the idea as "a dangerous fallacy unsupported by scientific evidence," and "practically impossible and highly unethical," the radiologist Trump added to his pandemic team is trying to convince people it's a grand plan.

Aside from the fact that we don't know enough about the natural immunity of this virus and the fact that "herd immunity" is a term used in vaccine science—not as a strategy of purposefully infecting people in order to get through an infectious disease outbreak —the idea of "infect the young, protect the vulnerable" is simply a unworkable strategy.

Look no further than the outbreak among the college student population in Pullman, Washington to see why.


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