My son’s disease progressed while the FDA waited



Birthdays should mark milestones, offer hope for another year, and remind us to cherish the people we love.

But on the first anniversary of the Food and Drug Administration’s decision to restrict access to Elevidys, a gene therapy for Duchenne muscular dystrophy, there will be no cake or candles in our home.

The only birthdays Duchenne families want to celebrate are the ones our children are still here to have. The FDA should help us light those candles.

My 14-year-old son, Ryu, is still fighting to reach another birthday.

A year ago, I was exploring Elevidys as a treatment that might help him live a longer, fuller life. Then, almost overnight, that hope disappeared. The FDA first halted use of the therapy entirely before restoring access only for boys who could still walk. Ryu, who already uses a wheelchair, was left behind.

By age 14, more than 82% of Duchenne patients use a wheelchair. After age 15, the share exceeds 90%.

I have spent my life living with Duchenne muscular dystrophy, a rare, progressive genetic disease that causes muscles to waste away and almost always leads to premature death. It has shaped every chapter of my family’s story. I watched my brothers, Angelo and Antonio, die from Duchenne in their early 20s.

I began considering Elevidys because I trusted the science and the physician who brought it to my attention. I believed my son deserved the same opportunity other eligible patients were receiving.

Instead, the past year has been heartbreaking.

Ryu’s disease has progressed. His breathing is weaker, and he relies on his BiPAP machine more than he did a year ago. Duchenne families measure time differently. Every lost ability is marked by a clock that never turns back.

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The FDA said it restricted Elevidys after reports of three patient deaths. Those boys died from liver complications, not complications caused by wheelchair use. Families like mine struggle to understand why patients with advanced disease lost access to a treatment because of risks that were not unique to them.

Safety must remain paramount. We are not asking regulators to approve every experimental therapy or ignore serious adverse events. Elevidys had already passed through years of research and clinical trials and had been administered to Duchenne patients before access was narrowed.

We are asking for something more modest and more humane: When a disease is progressive and fatal, families should be allowed to work with their doctors to decide whether the potential benefit justifies the risk for their own children.

The anniversary of the Elevidys restriction also marks the moment I turned 40 years of helplessness into action. I learned what an op-ed was and wrote my first one. I entered the intimidating world of social media.

On my first trip to Washington, D.C., I learned how to call an Uber and met with senators, staff members, other rare-disease mothers, and patients. I did not go because I wanted to become an activist. I went because I am a mother. I had to speak for my son and honor the memory of my brothers, who never lived to see the possibilities available to patients today.

My brother Angelo volunteered for experimental research in the 1990s, when almost no treatment options existed. He wanted future children with Duchenne to benefit from his courage. Years later, one of those children would be his nephew — my son.

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The FDA is entering a period of new leadership. The next commissioner should put patients first, recognize that rare diseases demand urgency, and trust families and physicians to make informed decisions together. Returning to the old approach would cost families the one thing no regulator can restore: time.

Hope has a birthday too. We celebrate it whenever a scientist makes a breakthrough, a doctor refuses to give up, a parent fights for one more chance, or the FDA chooses urgency over bureaucracy.

I pray this dark anniversary is the last time FDA policy leaves Duchenne families behind — and the beginning of a new era in which boys like Ryu have the chance to live as fully and as long as possible.

The only birthdays Duchenne families want to celebrate are the ones our children are still here to have. The FDA should help us light those candles.

How a psychic, New Age hippie led me to Catholicism



In 1993, I moved to an industrial city north of Prague, about 30 miles from the Czech/German border. Usti nad Labem had been around for almost a thousand years, but after half a century of socialist dictatorship, anything old had been replaced with hideous prefab housing estates and pollution-spewing chemical plants. It did have an old church from the 14th century, but I never went inside. It was just a relic of a time when being stupid and superstitious was the only option.

I had gotten a job teaching English to engineers at a local natural gas distribution company. I was a 22-year-old Ivy League liberal arts graduate. I had no experience or knowledge worth sharing, of course, and my students were older, with careers and families, and they treated me with deference anyway, as well as with kindness and hospitality. In return, I pitied them as hopelessly trapped in their small lives. I was meant for something bigger. I had no idea what, but I figured it would announce itself eventually.

Within seconds of meeting a girl at a party, he realized they had been lovers in prerevolutionary France, until he was garroted for trying to rescue her from prostitution.

East of Eden

I fell in with the small community of foreigners in town — about 10 Americans along with a few Brits and Canadians — but kept my distance. They weren’t the kind of friends I had in mind for myself — they were too provincial and unsophisticated.

Especially strange to me was a hulking gentle giant from Los Angeles named Chad. He was pushing 30 and lived off savings he had accumulated from a series of showbiz-adjacent jobs, including sales for a porn video distributer and caretaking an old Beverly Hills mansion now used for film shoots.

The mansion had been the site of a lurid, high-society murder-suicide in the '20s and was haunted. He told us of strange encounters he’d had there alone late at night, the distant sound of piano music, which abruptly stopped as he moved toward it; a heavy, nauseating feeling of malice that descended upon him in certain rooms, the eerie sensation of being shoved.

These stories held our attention, but they didn’t seem like a big deal to him. He had always been particularly sensitive to the supernatural, he said, and he had an endless supply of anecdotes bearing this out.

'Star 80'

There was overwhelming mutual attraction he shared with a girl within seconds of meeting her a party, only to realize they had been lovers in prerevolutionary France, until he was garroted for trying to rescue her from prostitution. He had vivid explorations of the lost city of Atlantis in lucid dreams, leaving him with an aching sense of being in exile. He was a connoisseur of 1970s femininity and could talk at length about the unearthly beauty and spiritual depth of murdered Playboy Playmate Dorothy Stratten, whose distinct presence he could often feel, no matter where he was in the world.

I found all this unforgivably hokey. And I felt it reflected badly on me and my future. But I had to admit he was funny and intelligent. We became friends, even though I secretly regarded him with detached, ironic amusement. I enjoyed the matter-of-fact, unpretentious way he delivered even his boldest claims. Once, in one of my regular hungover tailspins of anxiety, I asked him if he wasn’t afraid of nuclear war. He sighed with slight exasperation and explained that obviously the higher beings protecting Earth would never allow it.

This idea didn’t reassure me, but his relaxed, confident demeanor did. And I began to realize that maybe thinking crystals were nonsense didn’t make me a better person. Even if Chad weren’t the conduit to the spirit world he claimed to be, he was uncommonly empathetic and perceptive when it came to other people, which is why we all liked to be around him. Whereas my constantly shifting sense of who I was and what it all meant kept me in a state of agitated self-obsession.

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Under the bridge

I was too educated to believe that evil left some kind of spiritual mark on a place, but just 50 years ago, this city I used as the backdrop for my inner drama had been ceded to Hitler. Then, it was bombed by Americans. And just after the war, it was the site of a brutal massacre, in which a mob of Czechs attacked their ethnic German neighbors, shooting and stabbing some 100 men, women, and children and throwing them off the town bridge. Maybe Chad was a kook, but at least he made me consider that there might be something at stake in this world. That it mattered what we did and even what we thought. That transcendent good and evil were real and could touch us.

These abstract musings lost their appeal when Chad moved back to California and I moved to Prague. I was finally where the action was. Here the visionaries weren’t so gauche as to talk about communing with the dead or the melancholy of old souls lost in the slipstream of time. They were there to summon the coming techno utopia, which required optimism and an eagerness to let go of the past.

I was on board, but I was also undisciplined and easily discouraged. Everywhere I looked I saw monuments to martyrs: the heretic priest burned at the stake, the ordinary civilians killed in the doomed uprising against the Nazis, the young medical student who set himself on fire to protest the Soviet occupation. Their resolve, like my frantic strivings, seemed meaningless in the face of oblivion.

Settling down

The obvious cure for this self-indulgent, existential dread was to move to New York City and get serious about my life. I temped and lived in cramped apartments in cool neighborhoods and got a low-paying but status-signaling media job. I ran into an old college girlfriend with a sensible career and many of the same friends I’d had. We got married and had children, and we relocated to her hometown of L.A., which I’d heard so much about from Chad.

Chad had moved to a small town outside Sacramento with a wife and son. My wife and I were still in the thick of it, upwardly mobile and cultured, with high expectations for ourselves and our kids. It went without saying that we were good, tolerant people. Church was an occasional, unobtrusive reminder to be grateful and give back. We didn’t have any commitments that might make things awkward with our friends or put us at odds with our community.

I was comfortably settled but still imagined myself as on the verge of transformative, clarifying success. Until one day I didn’t. I wasn’t special, my kids would soon abandon me, and I was going to die. I tried to ease the panic with therapy, running, and Ram Dass videos on YouTube.

Auto-da-Facebook

A goth girl I did plays with in high school re-emerged on Facebook as a devout Catholic stay-at-home mom and pro-life activist. After a few pointless arguments, I calmed down and started reading everything she posted without comment. It was fascinating to imagine being so gullible and narrow-minded. I watched videos she linked to and read books she mentioned. I embedded myself in this bizarre, backwards culture.

A few months later, I was sitting in my car, saying the rosary for the first time, just to see what would happen. I guess I showed her.

I entered the Catholic Church about a year later. Just before the COVID lockdowns, I got a call that Chad had had a massive stroke. We hadn’t been in touch for years. I gave money to his recovery fund and got added to a text group of friends and family who unselfconsciously offered their prayers and invoked the healing power of God’s mercy. I was surprised at how natural I felt doing the same. And how praying actually felt like doing something helpful. I still include him in my daily rosary.

Maybe it’s just guilt that I haven’t written or called, but I like to think he can pick up on it somehow. If so, I hope he humors me, like I humored him 30 years ago.

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Analyzed to Death?

Depressed? Anxious? Maybe you should see someone. If so, good luck. According to the American Psychological Association, most mental health professionals are consistently and fully booked. Yet, for all that therapy, better mental health eludes Americans, says Jonathan Alpert, author of Therapy Nation—How America Got Hooked on Therapy and Why It's Left Us More Anxious and Divided. If anything, the author contends, mental health care is a likely cause of our collective psychological malaise.

The post Analyzed to Death? appeared first on .

'Why don't men go to therapy?' It all comes down to one very good reason



On both sides of the Atlantic, men, especially young men, are dying by suicide at rates that should freeze governments in their tracks. But the powers that be don’t seem to notice.

The U.K. watches males of all ages go under — boys dropping out of school, men in their 20s drifting between short-term jobs and long nights alone, 30s lost to drink, dread, or sheer exhaustion. The U.S. watches its men go under, too. Their suicide rates dwarf those of women, and overdose deaths skew heavily male.

When a young man limps into therapy, he’s met with soft voices, polite nods, and vague talk about letting his guard down.

Whenever this comes up, we hear the same insufferable chorus: Why won’t these men just go to therapy?

As if it’s that simple. As if men are ignoring a perfectly functioning safety net. As if they’re being stubborn for sport.

Girl talk

Most men aren’t avoiding therapy because they fear healing, but because the entire system is built with someone else in mind.

Walk into the average psychology department, clinic, or counseling office and look around. The landscape is overwhelmingly female — in training, in staffing, in leadership, in tone. In both the U.K. and the U.S., the majority of therapists are women.

While that isn’t inherently bad — many of these therapists are excellent — it does mean the system has been shaped by female norms, female communication styles, and female emotional instincts.

This is not a conspiracy theory but just an honest acknowledgment of reality. Men and women don’t experience mental suffering the same way. They don’t express it the same way. They don’t process it the same way. A woman in distress tends to talk her way outward. A man tends to go inward until the pressure builds, then either falls silent or implodes. Women spiral verbally; men quietly.

So when a young man limps into therapy — desperate, numb, maybe half a step away from ending it all — he enters a world where the emotional rules weren’t written for him. He’s told to “open up,” “talk through it,” “share feelings,” “name the emotion.” He’s met with soft voices, polite nods, and vague talk about letting his guard down. What he’s not met with is someone who speaks his language.

It’s a mismatch from the very first minute.

Manning up

And because therapy culture is so thoroughly feminized, a man struggling with anger, confusion, despair, or loss often feels like a stranger adrift in a foreign country — grappling with an unfamiliar language and baffling customs.

That’s not the therapist’s fault. But it is the system’s fault.

And this is the part no one wants to say out loud: Men respond better to men. Not because women are incompetent, but because no matter how skilled a female practitioner is, she will never fully understand what it means to move through the world as a man. Just as no man will ever fully understand the interior life of a woman.

A man who has lost his job, lost his marriage, or lost his sense of purpose doesn’t want to explain the weight of male shame to someone who has never carried it. A man who feels emasculated doesn’t want to define the word emasculated from scratch. A man drowning in a culture that treats masculinity as a pathology doesn’t want to walk into a room where he suspects that belief might subtly be shared.

And yes, he may be wrong. But suffering doesn’t make people clear-headed. If anything, it makes them cautious.

This is why men light up when paired with a male therapist — someone who knows the codes: the long pauses, the tight jaw, the clipped sentences, the jokes that aren’t jokes, the sudden confession buried in small talk. Someone who knows what it feels like to fail publicly and hurt privately. Someone who knows that “I’m fine” is never fine. Someone who understands that for men, emotional honesty often comes disguised as humor, deflection, or irritation.

But right now, the system expects men to adapt to it, not the other way around.

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Pundit patriarchy

And so the suicide numbers climb. Young men continue to vanish. Fathers fade. Sons and brothers never return home. Journalists write “What’s Wrong with Men?” think pieces. And the cycle rolls on, as pathetic as it is predictable.

If this were happening to young women, the entire culture would pivot. Funding would pour in. Campaigns would explode. Universities would redesign programs overnight. Therapy models would be reimagined to match the needs of the group in crisis.

But because it’s men — the group everyone assumes will always be fine, always be strong, always survive — nothing moves.

Maybe the darkest irony is that the very qualities that make men decline therapy — the sense of being misunderstood, mismatched, and misplaced — are the same qualities pushing them to the edge in the first place.

And unless the mental health world learns to meet men where they are, with approaches shaped by men who understand men, the funerals will continue, and everyone will keep acting surprised.

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WACK JOB: My adventures in the mental health industrial complex



I recently had a minor health issue, and while talking to my doctor, he mentioned that “stress and anxiety” might be contributing to my problem.

Probably a lot of patients at doctors' offices hear this. Unless you have a broken leg or tennis elbow, doctors can probably link your health problems to “stress and anxiety.”

Did I ever think: 'The steering wheel of my car has too many buttons. I should probably just kill myself'?

These days, this is probably a reasonable assumption. You’re constipated. You have headaches. Your stomach hurts. Stress and anxiety probably play a part.

When my doctor first suggested I contact the mental health department, I politely declined.

But when my health issue persisted, he mentioned it again, and this time, I agreed to check it out. Who knows? Maybe he’s right.

Head case highway

At my health care provider, it sometimes takes several weeks before you can see someone. But if you have mental health concerns, they get you right on the phone with a mental health specialist.

It seems like health care providers currently put an emphasis on getting everyone signed up for some kind of mental health regimen.

You let a dentist inspect and clean your teeth twice a year. Why not let a mental health expert have a regular look at your brain? And maybe suggest some tweaks and adjustments?

To be or not to be

I spent an hour on the phone with different people as I did my mental health intake. During these phone calls, I was asked repeatedly if I wanted to kill myself.

Had I ever imagined killing myself? Had I ever made plans to kill myself? Did I think about killing myself with a knife? Or a gun? Or by hanging?

Did I ever think: “The steering wheel of my car has too many buttons. I should probably just kill myself”?

I assumed this was done for legal reasons. But it was alarming how thorough the questioning was. And how many times I had to go through it.

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Brain candy

And then came the moment of truth: I was asked which kind of mental health care I sought. There were two choices: 1) therapy, or 2) drugs.

They didn’t say it quite so bluntly. It was more like “counseling” or “psychiatry.” And of course, my primary care doctor would be consulted as well.

But ultimately, this was my personal choice. Did I want to talk? Or did I want to take drugs?

I opted for talking since I don’t know anything about the drugs and was told as a child to “just say no” to them.

No, I played it safe and chose “therapy.” An appointment was made for me right away — with a therapist who had a Vietnamese name, which I think is female. (But I’m not sure.)

Positive feelings

By now, I felt good about this plan. I felt a sense of relief just admitting to the intake people that I might have a problem with stress and anxiety.

Of course, I had a problem with it. I’m an intelligent person living in a once great country that seems determined to ruin itself.

Forget about me committing suicide. My whole country was committing suicide! Why wouldn’t I be a little stressed and anxious?

The great therapy problem

Then, I thought about my new female Vietnamese therapist who I’d be visiting next week. What would I talk to her about?

That’s when I remembered the great therapy problem, which is that 90% of therapists are woke. The whole field is woke. Sitting around, discussing how you feel about things — instead of acknowledging how things actually are — is essentially the basis of all wokeness.

The publication's own Josh Slocum has talked about this. What if you’re a Republican and your therapist is a democratic socialist? To that therapist, everything you think or say might be hate speech. If you were outside the office, this person would want you arrested.

OK, I thought. I’ll just be careful what I say. And make sure to avoid certain subjects. We’ll probably be talking about “therapy topics” anyway. Like my family. My upbringing. What parts of my life cause my anxiety.

This way to the rubber room

BUT ALL OF THOSE THINGS ARE POLITICAL!!! At least nowadays they are. My family? Split by politics. My upbringing? I grew up conservative, and now I’m stuck in a blue city. The cause of my stress and anxiety? The insanity of present-day society!

I’m trying to visualize my first session with the Vietnamese therapist. She’ll probably be very young. Everyone at my health care facility looks to me like they’re in high school.

What on earth am I going to say to this woman? I have no idea. This might be a bad idea. Maybe I should have just gone for the drugs. Drugs don’t care who you voted for.

Allie Beth Stuckey exposes therapy’s popular ‘inner child’ concept as unbiblical



The therapy world has exploded in recent years. Not only has going to therapy been totally destigmatized and is even seen as a status symbol, but the research and clinical sides of the industry have developed an enormous range of different types of treatment.

But how are Christians supposed to view the therapy world? Just because a particular treatment has been touted as effective, does that mean a believer can give it a stamp of approval?

On a recent episode of “Relatable,” BlazeTV host Allie Beth Stuckey dove into the secular therapy world and exposed several popular practices as unbiblical — one of which is the concept of the “inner child.”

The “biggest threat” to Christian women in particular, says Allie, is “not progressivism,” “not feminism,” “not the New Age,” and “not toxic empathy.”

“It’s therapy culture,” she says bluntly.

“I actually believe that the progressivism, feminism, toxic empathy, emotionalism, me-centeredness, New Age-ish stuff that unfortunately infects so many women's Bible studies … and conferences are all downstream from the secular therapy, pop psychology, pseudo-spiritualism that we find on social media that is dedicated to women's therapy and therapy concepts.”

For Allie, a lot of "therapeutic language" is just “an excuse for complaining and self-centeredness” and “a replacement for sanctification, for self-denial, for generosity, and the hard work of Holy Spirit-empowered holiness.”

She says that nowhere is this more evident than in the concept of the “inner child.”

In the therapy world, the “inner child” refers to the part of your adult self that still carries the emotions, needs, wounds, and beliefs formed during childhood. Therapeutic treatments often include patients learning to identify, reconnect with, and heal their childhood wounds, unmet needs, and emotions through techniques like visualization, reparenting exercises, emotional processing, and inner dialogue work.

But Allie says that “there's no such thing as an inner child in the Christian worldview.”

While she validates the existence of “childhood memories,” “childhood experiences that shaped us,” and “childhood pain,” she argues that “the concept of an emotional or spiritual existence of an internal version of ourselves at 6 or 8 or 12 years old does not exist.”

Further, the concept of an inner child has problematic origins for the Christian, she says.

Sigmund Freud “popularized the idea that repressed childhood trauma is what drives much of our adult behavior,” but this perspective, Allie argues, denies our “sin nature that we inherited from Adam.”

One of Freud's protégés, Carl Jung, then expanded on the idea of an internal child, which he called “the divine child” — a symbol for the pure, whole, innocent, and miraculous potential inside each person.

But Allie condemns this concept, as it also denies the biblical reality of sin nature. It has also, however, birthed and fed the New Age notion of the “inner goddess” — a divine or sacred internal energy or essence in each person that, if awakened, allows one to reclaim personal wholeness and embody her highest self.

“This underlying assumption that if it weren't for all of these other factors, my inner self would be perfect and perfectly loved and if I can find her and find a way to perfectly love her and heal her, then I'll just be okay — that is a secular New Age idea. It's not a biblical idea,” says Allie, citing Jeremiah 17:9, which warns that “the heart is deceitful above all things.”

Ultimately, the inner child and other concepts that turn our gaze inward put the focus on us instead of God — the true healer, says Allie.

“This journey to finding the untainted, perfect, divine self inside of us is a losing battle that actually will just encourage more self-focus, which is the thing that is oppressing and trapping us, not the thing that's going to liberate us.”

To hear Allie’s full biblical breakdown of the inner child — as well as more therapy treatments that she argues are unbiblical — watch the episode above.

Want more from Allie Beth Stuckey?

To enjoy more of Allie’s upbeat and in-depth coverage of culture, news, and theology from a Christian, conservative perspective, subscribe to BlazeTV — the largest multi-platform network of voices who love America, defend the Constitution, and live the American dream.