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.
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.
Beaver in water. Photo by 
An actual beaver dam on the now-thriving Price River
Not just coworkers—family, friends, strangers, kids… 
Imagine having to go so badly but being out of euros. 
Anything hobbit-esque can't be wrong. 
But what if you need pain meds AND mascara?!
Imagine how this would affect childcare.
Honestly…where's the lie? 
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Urgent dash to the bathroom! 🚪🏃♂️
Ladybug unexpectedly found during colonoscopyPhoto credit: 
Close-up of bottom of ladybug found in colonPhoto credit: 
There's a reason why some people can perfectly copy accents, and others can't
Turns out, there's a neurodivergent link.
A woman in black long sleeve shirt stands in front of mirror.
Have you ever had that friend who goes on vacation for four days to London and comes back with a full-on Queen's English posh accent? "Oooh I left my brolly in the loo," they say, and you respond, "But you're from Colorado!" Well, there are reasons they (and many of us) do that, and usually it's on a pretty subconscious level.
It's called "accent mirroring," and it's actually quite common with people who are neurodivergent, particularly those with ADHD (Attention Deficit Hyperactivity Disorder). According Neurolaunch, the self-described "Free Mental Health Library," "Accent mirroring, also known as accent adaptation or phonetic convergence, is the tendency to unconsciously adopt the accent or speech patterns of those around us. This linguistic chameleon effect is not unique to individuals with ADHD, but it appears to be more pronounced and frequent in this population."
Essentially, when people have conversations, we're constantly "scanning" for information—not just the words we're absorbing, but the inflection and tone. "When we hear an accent, our brains automatically analyze and categorize the phonetic features, prosody, and intonation patterns," writes Neurolaunch. For most, this does result in copying the accent of the person with whom we're speaking. But those with ADHD might be more sensitive to auditory cues. This, "coupled with a reduced ability to filter out or inhibit the impulse to mimic…could potentially explain the increased tendency for accent mirroring."
While the article explains further research is needed, they distinctly state that, "Accent mirroring in individuals with ADHD often manifests as an unconscious mimicry of accents in social situations. This can range from subtle shifts in pronunciation to more noticeable changes in intonation and speech rhythm. For example, a person with ADHD might find themselves unconsciously adopting a Southern drawl when conversing with someone from Texas, even if they’ve never lived in the South themselves."
People are having their say online. On the subreddit r/ADHDWomen, a thread began: "Taking on accents is an ADHD thing?" The OP shares, "My whole life, I've picked up accents. I, myself, never noticed, but everyone around me would be like, 'Why are you talking like that??' It could be after I watched a show or movie with an accent or after I've traveled somewhere with a different accent than my 'normal.'
They continue, "Apparently, I pick it up fast, but it fades out slowly. Today... I'm scrolling Instagram, I watch a reel from a comedian couple (Darcy and Jeremy. IYKYK) about how Darcy (ADHD) picks up accents everywhere they go. It's called ADHD Mirroring??? And it's another way of masking."
(The OP is referring to Darcy Michaels and his husband Jeremy Baer, who are both touring comedians based in Canada.)
Hundreds of people on the Reddit thread alone seem to relate. One comments, "Omfg I've done this my whole life; I'll even pick up on the pauses/spaces when I'm talking to someone who is ESL—but English is my first language lol."
Sometimes, it can be a real issue for those around the chameleon. "I accidentally mimicked a waitress's weird laugh one time. As soon as she was out of earshot, my family started to reprimand me, but I was already like 'oh my god I don’t know why I did that, I feel so bad.'"
Many commenters on TikTok were shocked to find out this can be a sign of ADHD. One jokes, "Omg, yes, at a store the cashier was talking to me and she was French. She's like 'Oh are you French too? No, I'm not lol. I'm very east coast Canada."
And some people just embrace it and make it work for them. "I mirror their words or phrase! I’m 30. I realized I start calling everyone sweetie cause my manager does & I work at coffee shop."