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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.

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Judy Vaughan has spent most of her life helping other women, first as the director of House of Ruth, a safe haven for homeless families in East Los Angeles, and later as the Project Coordinator for Women for Guatemala, a solidarity organization committed to raising awareness about human rights abuses.

But in 1996, she decided to take things a step further. A house became available in the mid-Wilshire area of Los Angeles and she was offered the opportunity to use it to help other women and children. So, in partnership with a group of 13 people who she knew from her years of activism, she decided to make it a transitional residence program for homeless women and their children. They called the program Alexandria House.

"I had learned from House of Ruth that families who are homeless are often isolated from the surrounding community," Judy says. "So we decided that as part of our mission, we would also be a neighborhood center and offer a number of resources and programs, including an after-school program and ESL classes."

She also decided that, unlike many other shelters in Los Angeles, she would accept mothers with their teenage boys.

"There are very few in Los Angeles [that do] due to what are considered liability issues," Judy explains. "Given the fact that there are (conservatively) 56,000 homeless people and only about 11,000 shelter beds on any one night, agencies can be selective on who they take."

Their Board of Directors had already determined that they should take families that would have difficulties finding a place. Some of these challenges include families with more than two children, immigrant families without legal documents, moms who are pregnant with other small children, families with a member who has a disability [and] families with service dogs.

"Being separated from your son or sons, especially in the early teen years, just adds to the stress that moms who are unhoused are already experiencing," Judy says.

"We were determined to offer women with teenage boys another choice."

Courtesy of Judy Vaughan

Alexandria House also doesn't kick boys out when they turn 18. For example, Judy says they currently have a mom with two daughters (21 and 2) and a son who just turned 18. The family had struggled to find a shelter that would take them all together, and once they found Alexandria House, they worried the boy would be kicked out on his 18th birthday. But, says Judy, "we were not going to ask him to leave because of his age."

Homelessness is a big issue in Los Angeles. "[It] is considered the homeless capital of the United States," Judy says. "The numbers have not changed significantly since 1984 when I was working at the House of Ruth." The COVID-19 pandemic has only compounded the problem. According to Los Angeles Homeless Services Authority (LAHSA), over 66,000 people in the greater Los Angeles area were experiencing homelessness in 2020, representing a rise of 12.7% compared with the year before.

Each woman who comes to Alexandria House has her own unique story, but some common reasons for ending up homeless include fleeing from a domestic violence or human trafficking situation, aging out of foster care and having no place to go, being priced out of an apartment, losing a job, or experiencing a family emergency with no 'cushion' to pay the rent.

"Homelessness is not a definition; it is a situation that a person finds themselves in, and in fact, it can happen to almost anyone. There are many practices and policies that make it almost impossible to break out of poverty and move out of homelessness."

And that's why Alexandria House exists: to help them move out of it. How long that takes depends on the woman, but according to Judy, families stay an average of 10 months. During that time, the women meet with support staff to identify needs and goals and put a plan of action in place.

A number of services are provided, including free childcare, programs and mentoring for school-age children, free mental health counseling, financial literacy classes and a savings program. They have also started Step Up Sisterhood LA, an entrepreneurial program to support women's dreams of starting their own businesses. "We serve as a support system for as long as a family would like," Judy says, even after they have moved on.

And so far, the program is a resounding success.

92 percent of the 200 families who stayed at Alexandria House have found financial stability and permanent housing — not becoming homeless again.

Since founding Alexandria House 25 years ago, Judy has never lost sight of her mission to join with others and create a vision of a more just society and community. That is why she is one of Tory Burch's Empowered Women this year — and the donation she receives as a nominee will go to Alexandria House and will help grow the new Start-up Sisterhood LA program.

"Alexandria House is such an important part of my life," says Judy. "It has been amazing to watch the children grow up and the moms recreate their lives for themselves and for their families. I have witnessed resiliency, courage, and heroic acts of generosity."

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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