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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 Anna Shvets from Pexels
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Increasingly customers are looking for more conscious shopping options. According to a Nielsen survey in 2018, nearly half (48%) of U.S. consumers say they would definitely or probably change their consumption habits to reduce their impact on the environment.

But while many consumers are interested in spending their money on products that are more sustainable, few actually follow through. An article in the 2019 issue of Harvard Business Review revealed that 65% of consumers said they want to buy purpose-driven brands that advocate sustainability, but only about 26% actually do so. It's unclear where this intention gap comes from, but thankfully it's getting more convenient to shop sustainably from many of the retailers you already support.

Amazon recently introduced Climate Pledge Friendly, "a new program to help make it easy for customers to discover and shop for more sustainable products." When you're browsing Amazon, a Climate Pledge Friendly label will appear on more than 45,000 products to signify they have one or more different sustainability certifications which "help preserve the natural world, reducing the carbon footprint of shipments to customers," according to the online retailer.

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In order to distinguish more sustainable products, the program partnered with a wide range of external certifications, including governmental agencies, non-profits, and independent laboratories, all of which have a focus on preserving the natural world.

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In the hours before he was sworn in as the 46th president of the United States, then-President-elect Biden was sent a letter signed by 17 freshmen GOP members of the House of Representatives.

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The letter reads:

Dear President-elect Biden,

Congratulations on the beginning of your administration and presidency. As members of this freshman class, we trust that the next four years will present your administration and the 117thCongress with numerous challenges and successes, and we are hopeful that – despite our ideological differences – we may work together on behalf of the American people we are each so fortunate to serve.

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If the past year has taught us nothing else, it's that sending love out into the world through selfless acts of kindness can have a positive ripple effect on people and communities. People all over the United States seemed to have gotten the message — 71% of those surveyed by the World Giving Index helped a stranger in need in 2020. A nonprofit survey found 90% helped others by running errands, calling, texting and sending care packages. Many people needed a boost last year in one way or another and obliging good neighbors heeded the call over and over again — and continue to make a positive impact through their actions in this new year.

Upworthy and P&G Good Everyday wanted to help keep kindness going strong, so they partnered up to create the Lead with Love Fund. The fund awards do-gooders in communities around the country with grants to help them continue on with their unique missions. Hundreds of nominations came pouring in and five winners were selected based on three criteria: the impact of action, uniqueness, and "Upworthy-ness" of their story.

Here's a look at the five winners:

Edith Ornelas, co-creator of Mariposas Collective in Memphis, Tenn.

Edith Ornelas has a deep-rooted connection to the asylum-seeking immigrant families she brings food and supplies to families in Memphis, Tenn. She was born in Jalisco, Mexico, and immigrated to the United States when she was 7 years old with her parents and sister. Edith grew up in Chicago, then moved to Memphis in 2016, where she quickly realized how few community programs existed for immigrants. Two years later, she helped create Mariposas Collective, which initially aimed to help families who had just been released from detention centers and were seeking asylum. The collective started out small but has since grown to approximately 400 volunteers.