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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.

Courtesy of Verizon
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If someone were to say "video games" to you, what are the first words that come to mind? Whatever words you thought of (fun, exciting, etc.), we're willing to guess "healthy" or "mental health tool" didn't pop into your mind.

And yet… it turns out they are. Especially for Veterans.

How? Well, for one thing, video games — and virtual reality more generally — are also more accessible and less stigmatized to veterans than mental health treatment. In fact, some psychiatrists are using virtual reality systems for this reason to treat PTSD.

Secondly, video games allow people to socialize in new ways with people who share common interests and goals. And for Veterans, many of whom leave the military feeling isolated or lonely after they lose the daily camaraderie of their regiment, that socialization is critical to their mental health. It gives them a virtual group of friends to talk with, connect to, and relate to through shared goals and interests.

In addition, according to a 2018 study, since many video games simulate real-life situations they encountered during their service, it makes socialization easier since they can relate to and find common ground with other gamers while playing.

This can help ease symptoms of depression, anxiety, and even PTSD in Veterans, which affects 20% of the Veterans who have served since 9/11.

Watch here as Verizon dives into the stories of three Veteran gamers to learn how video games helped them build community, deal with trauma and have some fun.

Band of Gamers www.youtube.com

Video games have been especially beneficial to Veterans since the beginning of the pandemic when all of us — Veterans included — have been even more isolated than ever before.

And that's why Verizon launched a challenge last year, which saw $30,000 donated to four military charities.

And this year, they're going even bigger by launching a new World of Warships charity tournament in partnership with Wargaming and Wounded Warrior Project called "Verizon Warrior Series." During the tournament, gamers will be able to interact with the game's iconic ships in new and exciting ways, all while giving back.

Together with these nonprofits, the tournament will welcome teams all across the nation in order to raise money for military charities helping Veterans in need. There will be a $100,000 prize pool donated to these charities, as well as donation drives for injured Veterans at every match during the tournament to raise extra funds.

Verizon is also providing special discounts to Those Who Serve communities, including military and first responders, and they're offering a $75 in-game content military promo for World of Warships.

Tournament finals are scheduled for August 8, so be sure to tune in to the tournament and donate if you can in order to give back to Veterans in need.

Courtesy of Verizon

Ready for the weekend? Of course, you are. Here's our weekly dose of good vibes to help you shed the stresses of the workweek and put yourself in a great frame of mind.

These 10 stories made us happy this week because they feature amazing creativity, generosity, and one super-cute fish.

1. Diver befriends a fish with the cutest smile

Hawaiian underwater photographer Yuki Nakano befriended a friendly porcupine fish and now they hang out regularly.

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