Last month, while many veterans celebrated Joe Rogan and President Donald Trump’s support for psychedelic drugs, those in the Huntington’s disease community like me faced another disappointment. UniQure, a company with a promising treatment, may be abandoning the U.S. market because of bureaucratic roadblocks.

I’m not the president or the world’s most popular podcaster. What I am is a daughter who has tested positive for the Huntington’s disease gene and will one day exhibit the same symptoms of this disease that ate away at my father’s personality and his mind until he took his own life.

The FDA’s answer always seems to be the same when it comes to rare disease treatments: Wait, wait, and then wait some more.

I have advocated for the Huntington’s disease community, both in my father’s memory and with the hope that my future will be different from his. The outlook is dim for those like me unless the Food & Drug Administration allows access to treatments like AMT-130, which UniQure is now advancing first in the U.K. after the FDA’s unreasonable demands pushed the United States down the priority list.

Those demands are disastrous for Huntington’s disease patients. Launching a placebo trial under the FDA’s proposed new criteria would require non-therapeutic injections into the brains of study patients — hardly aligning with medical ethics.

Even without the basic inhumanity of this type of trial, Huntington’s patients simply cannot afford the years it would take to complete it. We are living on a much shorter timeline, defined by a merciless disease that is both progressive and fatal.

I’m glad that veterans are getting the attention they deserve and that they have the support of influencers like Rogan. But it raises an important question: Why should it take a celebrity and the president to push the FDA to follow basic common sense and medical best practices?

For years, the rare-disease community has done everything we were told would make a difference. We organized, advocated, and pushed for change with whatever strength we had, often while managing devastating diagnoses and worsening symptoms.

Parents of children with Duchenne muscular dystrophy and Sanfilippo syndrome, to name but two groups, have advocated while watching their children decline.

The FDA’s answer always seems to be the same when it comes to rare disease treatments: Wait, wait, and then wait some more. That means we’re running down hours on a clock that ticks ominously louder with every passing month. We don’t have time for years of unnecessary testing.

RELATED: Want to live to 100? Don’t expect Big Pharma to help.

Tom Merton/Getty Images

Rogan’s intervention shows that the system can move quickly when it wants to — certainly the president will listen when voices with direct access amplify a cause. Now we need to see that same urgency applied to treatments for rare diseases.

Families like mine are not looking for special treatment. We are only asking for the choice to take the risk of trying new medicines when all the old options have failed. After all, we know the future that awaits us.

President Trump already made the right move with the Right to Try Act, which gives terminally ill patients a pathway to access potentially lifesaving or life-extending treatments. It is critical that he push FDA officials to commit to the same right-to-try principles he championed in his first term.

Scientists are making incredible strides in treating rare diseases. But that innovation only matters if patients are allowed to use treatments already developed. Adults like me, and kids with terminal rare diseases whose parents approve, are absolutely willing to accept any risk that comes with trying a new therapy.

Until someone steps up to bat for people like me, our only alternative is the certainty of an illness that will slowly, relentlessly ruin our lives and then snuff them out.

​Big pharma, President donald trump, Veterans, Innovation, Huntington’s disease, Right to try act, Fda, Clinical trials, Experimental treatment, Medical ethics, Opinion & analysis 

The Southern Poverty Law Center was federally indicted on April 21 for allegedly funneling millions of dollars to the very racist and extremist groups it claimed to be fighting, including the Ku Klux Klan, the Aryan Nation, the American Front, United Klans of America, and the National Socialist Party of America.

The Alabama-headquartered smear- and fearmongering racket — charged with six counts of wire fraud, four counts of making false statements to a federally insured bank, and one count of conspiracy to commit concealment money laundering — pleaded not guilty on Thursday to all counts.

‘We have always suspected that they were monetizing hate.’

“The charges against the SPLC are provably wrong,” stated SPLC interim president and CEO Bryan Fair. “They are based on inaccurate facts and a misapplication of law. Our informant program was successful in accomplishing its purposes: Threats and attacks were prevented, criminal activity was stopped, and information was gathered to dismantle the efforts of hate and extremist groups.”

Now thanks to the state of Alabama, SPLC smear merchants will have to mount a defense on more than one front.

Alabama Attorney General Steve Marshall announced on Monday that his office has launched a civil investigation into the SPLC, alleging deceptive fundraising practices under Alabama’s consumer protection statutes.

The probe is looking specifically at whether the SPLC’s alleged activities referenced in the federal indictment violated Alabama’s Deceptive Trade Practices Act or other state laws concerning charitable organizations.

RELATED: Klansman allegedly on SPLC payroll was ‘true believer’ white supremacist, not reformed infiltrator

Graeme Sloan/Bloomberg/Getty Images

Marshall’s office has subpoenaed SPLC documents disclosing to Alabama donors or prospective donors the organization’s use of “informants”; identifying the annual donations received from donors in Alabama and beyond; showing annual disbursements of donated funds to “informants”; reflecting the percentage of the SPLC’s annual budget blown on “informant”-related costs; and showing payments to groups or individuals appearing in the SPLC’s extremist files or on its hate map.

The SPLC, which has been ordered to produce these documents by June 1, confirmed to WSFA-TV that the organization’s leaders “have received notice of a subpoena and are currently reviewing.”

“My office has been fighting the SPLC for years — whether fighting them to protect minors from transgender medical procedures, fighting them to keep bad guys behind bars, or fighting them to preserve Alabama’s Republican congressional districts,” Marshall said in a statement.

“We have always suspected that they were monetizing hate and trading on race-baiting; it was just a matter of proving it,” continued Marshall. “Thanks to the U.S. Justice Department’s action to deal with the SPLC, the state’s efforts have now received a shot in the arm. We look forward to learning more about the inner workings of an organization that we have long believed was rotten but, until recently, has been impervious.”

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​Alabama, American front, Extremism, Federally indicted, Hate, Hate map, Kkk, Ku klux klan, Leftism, National socialist party, Race baiters, Race hustlers, Radicalism, Southern poverty law center, Splc, Steve marshall, United klans of america, Wire fraud, Politics 

Internet companies are perfectly happy to gobble up as much user data as possible so that they can sell it to third-party data brokers, monetize targeted ad networks, and even feed large language models that power the next generation of AI. For decades, this mass data grab went on with little legal regulation to rein in the worst offenders. However, House Republicans recently unveiled a new federal privacy bill that will change the way Big Tech handles personal and private data for good.

What is the SECURE Data Act?

Short for “Securing and Establishing Consumer Uniform Rights and Enforcement,” the SECURE Data Act directly gives users more control over the way companies access and use their personal information on the web. The bill establishes two major frameworks — one outlining the rights of consumers and the other to limit the actions of corporations.

Users get full control over the collection and monetization of their data.

Consumer rights under the SECURE Data Act

Access: Users have a right to know when a company accesses or processes their personal data, as long as this knowledge doesn’t violate company trade secrets.

Pro: Users gain a full understanding of how their information is applied to the websites they visit, the apps they use, and the services they subscribe to. This, in turn, empowers them to make informed decisions on which companies they choose to support based on their data collection practices.Con: Companies will have to invest in expensive resources to document and report on the data of every user, costing the company time and money that lead to potential reporting delays.

Corrections: Users can contact a company to correct inaccurate details saved in their personal data. This can include user names, email addresses, home addresses, and other markers.

Pro: Users ensure that any information a company uses is current and accurate to prevent errors.Con: Companies can use the updated information to build optimized profiles of its users for even more targeted online tracking.

Deletion: If the user no longer wants a company to access their data, they can request to have their information deleted from a company’s servers entirely. This includes data that the user provides themselves, as well as information the company gathers on its own.

Pro: Users get full control over the collection and monetization of their data, and they can revoke access if the company abuses that power. This can also be used as a tool to boycott companies if/when companies take a stance that opposes the views and beliefs of their users.Con: Companies will miss out on vital data that they would use to build better products and services for their customers, potentially leading to the stagnation of future apps, products, and services.

Man_Half-tube/Getty Images

Transferability: User data must be stored in a format that can be exported and transferred to another company, such as in the case of switching from an app, service, or operating system to another.

Pro: Instead of being locked into a certain platform or app, users can freely take their data to a competitor as they see fit. As an example, this will be especially useful for users who want to switch from iPhone to Android and vice versa.Con: Without an encrypted data standard across all platforms and services, converting data into an easily transferable format could weaken encryption and lead to potential data security risks.

Control: Users reserve the right to opt out of selling their personal data to third-party partners or participating in targeted advertising.

Pro: Users can actively prevent companies and data brokers from building digital profiles that track users’ buying habits, online interests, and more.Con: A lack of user data could cause economic damage to the marketing and digital ad industries.

Company limits under the SECURE Data Act

In order to supply consumers with the rights above, companies must adhere to these key mandates:

Minimization: Companies are limited from collecting user data en masse, instead restricting them to gather only what is considered “adequate” for their business.

Pro: Companies are ultimately barred from spying on their customers’ online habits, a huge win for the sake of user privacy.Con: This restriction is too vague without any real hard limits, leaving it open to interpretation. For instance, a company like Google may insist that large amounts of user data are necessary to support its free services and ad business, while competitors are barred from gathering to the same degree.

Limitations: Gathered data can only be used for the expressed reason it was collected, and companies can’t save or repurpose data for other projects without users’ consent.

Pro: Users can feel confident that their data isn’t being used in secret projects or private moneymaking schemes.Con: This may limit a company’s ability to conduct research and development with users’ data, potentially slowing down the creation of future products and limiting innovation.

Discrimination: Data cannot be collected or processed based on race, ethnicity, or other identifying factors. Furthermore, companies can’t use these factors to deny goods and services, offer dynamic prices, or alter their products’ quality of service.

Pro: Companies would essentially be barred from punishing users who don’t align with their own ideas of diversity, equity, and inclusion.Con: The bill doesn’t strictly protect religious beliefs and political affiliations, leaving companies a pathway to oppose users who don’t think or vote in favor of their values.

Notice: Companies must educate users on how their data is processed, saved, sold, and applied to their business. At this point, users will also have the option to make changes as part of their protected rights.

Pro: Companies can no longer hide how they make money from their users’ private data.Con: Similar to the GDPR-compliant cookie notices that pop on the websites you visit, users may receive so many data notices from the services they use that they either accept without reading the terms or ignore them entirely.

Sale: Companies must notify users when their data is about to be sold and why, giving them the chance to opt out before the sale takes place.

Pro: Consumers can ultimately prevent companies from making money by selling their information to data brokers and third-party partners.Con: If a user doesn’t intervene before their data is sold, it may become difficult to trace where the data goes and how it’s utilized by brokers and third-party partners down the line.

Sensitive data under the SECURE Data Act

Lastly, the bill provides special protections for “sensitive data,” especially for underage users, noting that parents must consent before companies can collect information on minors. The most important part here is that unlike many of the age-verification bills coming from both sides of the aisle right now, the SECURE Data Act doesn’t require a user to prove their age through any form of identification. Instead, the responsibility to declare underage data is left in the hands of parents, not the government.

A win for consumers

Internet companies have gathered user data for decades with very little legal oversight. As usual, the government is late to legislate, and yet, the SECURE Data Act couldn’t come at a better time. AI companies, like OpenAI, Anthropic, and Google, have shifted their data collection practices into overdrive, all bent on gorging their LLMs before President Trump’s AI framework ends their plight. The SECURE Data Act is just another piece of the puzzle that will finally give users robust protection over their digital footprint on the internet.

​Big tech, Privacy, User data, Secure data act, Tech 

Last week, the Vatican released a report from Study Group 9 of the Synod on Synodality, one of 10 groups set up by Pope Francis in 2024 to examine controversial issues.

Titled “Theological Criteria and Synodal Methodologies for Shared Discernment of Emerging Doctrinal, Pastoral, and Ethical Issues,” the report presented testimonies from two gay Catholic men in same-sex civil marriages.

The report has sparked quite a controversy in the Catholic faith. Very traditional Catholics — and even some evangelical Christians — have largely viewed it as dangerous and subversive, seeing it as undermining long-standing Church teaching on the sinfulness of homosexual acts by platforming positive testimonies of same-sex “marriages” and downplaying doctrine in favor of subjective experience.

BlazeTV host Liz Wheeler, who describes herself as a devout Catholic, addressed the synod report on a recent episode of “The Liz Wheeler Show.”

She first addresses the panic of those who interpret the report as indicative of imminent change to Church doctrine.

“One of these documents from a synod is not Church dogma. It is not magisterial teaching. It has no authority to change doctrine of the Church. It is at best … an advisory committee that puts together reports that advise the pope on how to handle issues pastorally,” she says, noting that the pope is free to “accept these recommendations or not.”

As of now, Pope Leo XIV has neither formally accepted nor rejected the report.

“Even if he did [accept it], it’s not binding. It’s not doctrine or dogma,” says Liz.

That said, she acknowledges that ”there is valid concern that the ‘pastoral’ nature of this advice will encroach, at least in praxis, on the official teaching, the unchangeable doctrine, of the Church — at least at the local level,” which Liz says would be “a moral travesty” despite the fact that the “teaching remains unchangeable.”

After reading the report herself, she admits that the report is written “in an ambiguous way” that makes it unclear whether or not the synod is neutrally summarizing testimonies of two gay Catholic couples or “embracing” their viewpoints and lifestyle.

“The generous way to interpret this [synodal report] would be listening to people who struggle with sin can help you help them; there is value in hearing what led someone to a particular struggle,” says Liz.

“That would be fine … as long as your goal for these people is the fullness of Christ, as long as your goal is not indulgence, an excuse for their sin, redefinition of sin,” she explains. “So if this synod report that includes these testimonies is including the testimonies because they want to better understand how to bring these people out of their sin into the fullness of Christ, OK, that’s fine.”

Liz admits that she is reluctant to be generous in her reading of the synod report because of the ambiguity in which the testimonies are presented.

“How on earth could you not clarify whether you are embracing that testimony or whether you are simply summarizing it — especially when you know it will cause tremendous confusion, even scandal, among the faithful?” she asks.

The “defensive way” to interpret the report, says Liz, is to read it as a genuine attempt “to sneak effective changes to doctrine that [homosexuality advocates] have no authority to change into the pastoral practice of the Church, hoping it becomes the de facto norm in the Church, despite the contradiction to unchangeable Church teaching.”

While Liz is torn between the generous and defensive interpretations, the most important thing, she says, is what the Catechism of the Catholic Church actually teaches: that homosexual acts are intrinsically disordered, are contrary to natural law, and can never be approved, but that people with deep-seated homosexual tendencies must be accepted with respect, compassion, and sensitivity, with every sign of unjust discrimination avoided, and are called to live chastely through self-mastery, prayer, and friendship.

“That is the official, unchangeable teaching of the Catholic Church on homosexuality, and it’s beautiful,” she says.

To hear more of Liz’s analysis, watch the episode above.

Want more from Liz Wheeler?

To enjoy more of Liz’s based commentary, subscribe to BlazeTV — the largest multi-platform network of voices who love America, defend the Constitution, and live the American dream.

​Blaze media, Blazetv, Conversion therapy, Homosexuality, Liz wheeler, Pope francis, Pope leo xiv, Study group 9, Synod on synodality, Synod report, The liz wheeler show, Vatican, Vatican report 

Texas police said they’re investigating the death of six people found in a boxcar by a Union Pacific employee at a rail yard on Sunday.

Police said they responded to a call of “multiple casualties” at about 3 p.m. A Webb County medical examiner said the dead included one woman and five men.

One of the other dead persons appears to be a teenager. Officials said they believe they are all from Mexico and Honduras.

The examiner identified the female victim as a Mexican national and one of the men as a Honduran national.

The official noted that temperatures had reached up to 105 degrees when the bodies were found.

“Following initial examinations, it has been determined that the female victim succumbed to hyperthermia,” reads the statement from the medical examiner. “While formal examinations for the remaining five individuals are still pending, it is highly probable that hyperthermia was the cause of death for the entire group.”

One of the other dead persons appears to be a teenager. Officials said they believe they are all from Mexico and Honduras.

Laredo Police investigator Jose Baeza said determining the origin of the train was “at the crux” of the ongoing investigation, which he described as fluid.

“Imagine a loading dock at a seaport, but for trains,” Baeza said to NBC News in a phone interview. “This is where they load and unload a lot of rail cars.”

A spokesperson for Union Pacific said the company was cooperating with the investigation and was “saddened” by the incident.

RELATED: At least 46 illegal aliens found dead in a trailer in San Antonio, and death toll may climb higher

The International Organization for Migration reported that the lowest figure of migrant deaths in the Americas had been lodged for 2025, likely because of the crackdown on illegal immigration at the U.S.-Mexico border.

They said about 414 migrants died in the Americas in 2025. Total deaths declined about 68% in 2025 from those in 2024, which coincides with President Donald Trump getting into office.

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​Dead migrants, Dead people in boxcar, Dead people laredo rail yard, Heat exhaustion deaths, Politics 

I have never considered flying to be a luxurious experience, and this trip was no exception. I don’t think I’m speaking out of turn when I say that all I or anyone else on the flight from Dallas to Detroit on Christmas morning wanted was for it to be over as quickly as possible.

I had waited in the inevitable jetbridge backlog, found my seat, dutifully ignored the safety briefing, and was ready to see if I could manage an hour or so of sleep. As the plane reached cruising altitude, I — having momentarily gained the upper hand in the case of Pestritto v. airline seat — began to slip into a light doze.

In the back of my mind, I knew it was coming, but that didn’t make it any more bearable. The crackle of the PA system, the monotone, forced cheerfulness of the flight attendant as he delivered the fateful words: “We’d like to take this chance to tell you about a special promotion being offered on this flight.”

For a brief instant, some small part of me considered pulling the emergency door handle. Surely the icy blast of air at 33,000 feet couldn’t be any worse than enduring the dreaded American Airlines credit card pitch.

When I arrive at the airport, I am prepared to suffer.

After this brief instant of nihilism, the better angels of my nature prevailed, and I contented myself with a silent sigh, listening to the pitch as I meditated on the script’s use of the passive voice. As if the airline were saying, “This promotion is being pitched without your consent. By whom? No idea. We would certainly never inflict such an indignity upon our paying customers.”

Let me take a moment to make my position clear. I understand that air travel is an unpleasant experience. Anyone who has taken a flight more than once in his life almost certainly understands this fact.

I have shrugged my shoulders for two hours straight in a middle seat. I have sat on the tarmac for longer than I thought possible. I have nearly missed my flight because it took four TSA officers to handle the bomb threat posed by the pink sippy cup belonging to the toddler in front of me.

All that to say: When I arrive at the airport, I am prepared to suffer.

However, air travel and I used to have an agreement. Once I made it through the ritual humiliation of the airport process and actually got to my seat on the plane, I was left more or less alone to endure the next few hours as best I could.

I grew up making two-day road trips in a Suburban with my parents and seven siblings, so I consider myself something of an expert at enduring hours of cramped travel conditions. The trick is just sort of retreating within yourself, ignoring your surroundings, and letting the dull misery of the situation become a sort of vague background noise.

This strategy is why I support Delta’s recent decision to end in-flight refreshments on trips of less than 350 miles. Unless the flight is long enough to warrant it, I don’t want my restless slumber disturbed by a voice asking if I want apple juice like it’s lunchtime at the day care or, if I’m the hapless occupant of an aisle seat, my elbow socket being rearranged by the passage of the snack cart.

I want it to just be me, my popping ears, and my very sore rear end until such time as we touch down and I can begin the “Mad Max: Fury Road” experience of trying to get off the plane.

I should have known, though, that modernity is never content to rest on its laurels. Like a roaring lion, it goes about constantly seeking whom it might devour — if by “devour” we mean “deprive of both money and will to live.” Since most airline passengers are neither sober nor watchful, the airlines are as good a place for devouring as any.

RELATED: Artemis II proves America still knows how to reach for the heavens

Jim WATSON/AFP/Getty Images

American Airlines is not alone in its quest to eliminate any and all in-flight respite. I have sat through what can only be described as lottery drawings on Spirit Airlines (may she rest in peace), heard random promotions for goodness knows what on Frontier, and been pitched on the same Delta credit card I had in my wallet at the time.

I understand, to a certain degree, why the airlines see fit to inflict these announcements on their passengers. If you look into it, you’ll find that most airlines today are basically just “banks that happen to fly planes.” They actually lose money on the flying part of the operation, which probably has something to do with the incessant attempts to bring customers over to the profitable side of the business.

The details of airline loyalty programs and how they have changed the industry is a story for another time. My concern is twofold.

First: How long can I endure these incessant credit card pitches before I commit self-harm or — far worse — break down and get one of them?

Second: What’s to stop this most heinous of sales methods from spreading to other forms of transportation? How long will it be before I have to endure automated pitches for the Honda GroundMiles Card whenever I stop at a red light?

I don’t expect much when I travel. Whether I’m sitting in Dallas traffic or at cruising altitude over Oklahoma, my greatest desire at this point is to endure the agony unassisted by the vicissitudes of corporate marketing.

​Airlines, Air travel, Airline credit cards, Delta airlines, Spirit airlines, Flying experience, Dallas, Detroit, Tsa, Frontier airlines, American airlines, Travel, Opinion & analysis