Lauren Taylor

1997 at this age. 32 years old. Time to treat. Brain is adaptable. By 38 she wasn't driving and bed bound. Its ok I know she is in a better place but now for mothers day I visit her grave ❤️. With a diet coke and Dairy Queen.

Marty Makary was supposed to be one of President Donald Trump’s more conventional advisers. Instead, tension and controversy have clouded his tenure. Insiders say one more high-profile misstep could put the FDA commissioner’s job at risk. bloomberg.com/news/features/…

@CassandraTesla @houmanhemmati @Elijahjstacy I appreciate you're very thoughtful 💕 response.

Sorry about your experience and loss of your mother. I know this is a difficult situation you are in as well. We are at a crucial juncture for truth and transparency, where it is vital that all data is accounted for and accessible, regardless of the situation. The presence of missing data discrepancies within the FDA and major pharmaceutical companies raises serious ethical and moral concerns. Tackling this issue is essential for realigning the FDA’s mission to prioritize safety and efficacy. The pressing question is: will they take action? Ensuring that all data is publicly available will empower individuals to make informed decisions about their healthcare. This transparency will foster a new approach to decision-making, allowing consumers to weigh the benefits, risks, and costs associated with their healthcare choices more effectively. I put my daughter at risk by seeking ineffective and costly drugs for her multiple sclerosis. These treatments not only strain our finances but could also jeopardize her health in the long run. The understanding of this disease is still limited, and many people manage well without medication, yet modern medicine often insists on very expensive drug interventions. While the condition does require attention, the available drugs frequently cause harm and fail to deliver results. It's crucial that we take a closer look at multiple sclerosis, as it affects a small population and results in significant costs—not just in taxpayer money but in the lives and well-being of those impacted, leading to avoidable premature death and disability. What has truly changed in the advancements of multiple sclerosis from the past? Money that’s what has changed money ! 💰

Spot on @Elijahjstacy - patients deserve simple clarity on the FDA’s true role. FDA approval is not an endorsement that a drug is “incredible” or the best on the market. It’s like a building permit: it simply confirms the therapy meets rigorous standards for safety and efficacy. Once that permit is granted & the drug reaches the market, FDA is only one of four layers of protection & decision-making. Patients can choose not to take it, doctors can decide not to prescribe it, and insurers can opt not to pay if it’s not right for that individual. Taking away choice because a drug isn’t “absolutely perfect” means patients and physicians never even get the option to consider it. Putting patients first means preserving every possible tool—so families and doctors can decide together.

@pulse2news Stealing from a bunch of Peter's to pay one Paul

Latus Bio: $97 Million Series A Raised To Advance Gene Therapy Platform Into Larger Patient Populations: Latus Bio, a biotechnology company engineering scalable gene therapies for broader patient populations, has closed a $97 million Series A financing,… dlvr.it/TSML6m

@CassandraTesla @houmanhemmati @Elijahjstacy I will not speak for what data does or does not do. The intention is Gene Therapies work. At a time when the data protocols can not keep up?!?!

@LTweet88 @houmanhemmati @Elijahjstacy The missing data! A lot of missing data that makes drugs look great!

@RxRegA The Right to Try was the BLA submission. This is the start of confusion.

There’s a difference between supporting access and maintaining a credible evidentiary standard. When the focus shifts toward making any option available, it can blur the question FDA is actually tasked with answering: does the evidence support a favorable benefit–risk profile?

@Lucy3370 I read up about the cancer being denied.. ha Responsible choices. @DrMakaryFDA and @WSJ you can find what they posted about what happened to all of us. Regards. We're smart here just being human.

@LTweet88 Totally understand. Lost my mom to cancer many yrs ago but today there r much better treatments available 4her type of cancer- so when u know there’s something that cud greatly impact ur disease (Amt-130)-extremely frustrating to b denied that life altering/saving treatment $qure

When you turn 50 with Huntington's disease. @DrMakaryFDA @Help4HDI @FDACBER @MartinShkreli @SenTedCruz @houmanhemmati Kim my mom died on her granddaughters 8 th birthday. Her only wish was to see her kids and grandkids treated. Make her dying wish come true @OSUWexMed

@mike98572986 This is when Trump goes You're FIRED lmfao 🤣

$qure $clpt New WSJ article on Makary, got ripped to pieces and really laid out the entire soap opera from start to finish. The whole article is pretty remarkable. Some parts of the article. “My sources say that patience with Dr. Makary is wearing thin among Republicans in Congress and White House officials. It’s time for Mr. Trump to pull the plug on the Makary show.” “Has any Trump administration official caused more political headaches for the president than Marty Makary? His Food and Drug Administration has turned into a soap opera, with real lives hanging in the balance.” Ditto a gene therapy by UniQure for the brutal neurodegenerative Huntington’s Disease, which slowed progression by 75% in a clinical trial. The FDA has demanded the company run another trial in which some patients would have to undergo sham brain surgery to serve as a control group. This is unethical. To add insult to injury, after Huntington’s patients blasted Dr. Makary and the FDA, a spokesperson for the agency derided them on social media as “the swamp.” In a CNBC interview, Dr. Makary claimed the drug had “no benefit” and that the agency was being “pressured to approve” it by industry. Dr. Makary is slicker than a pharmaceutical salesman. In public interviews, he boasts about accelerating access to gene therapies and rare-disease drugs, even as he and his deputies block them. When FDA rejections draw criticism, he uses “industry” as a bogeyman. Lawmakers aren’t buying his act.

@mike98572986 Good one I saved it

$qure $clpt Makary getting destroyed in the wsj

The FDA under Makary isn't dominated by Big Pharma. It isn't captured by the 'swamp' of Huntington's victims and their families either. It's run by the money of John Arnold the ex-Enron betting addict. His former Arnold Ventures employee Katherine Szarama is now acting CBER director. The real swamp stinks from the head. #TimeMatters #AMT130 $QURE

@DrMakaryFDA @Help4HDI @FDACBER @MartinShkreli @SenTedCruz @houmanhemmati @OSUWexMed In the moments time stops. You're heart stops. life keeps moving forward. This makes us resilient. But not immune to lack of compassion and consideration.

Ten years ago I met Katie in Houston. Not only did I listen I watched her every move. I listened as her husband died and my mother died. Nothing went unchanged. Except developing a Gene Therapy that works @OSUWexMed @FDACBER @Help4HDI @laurencurehd @DrMakaryFDA

$qure $clpt Here is the full Grace science article, a lot of crazy stuff in this one. It was the manufacturing but it seems the fda also said plausible mechanism is only for n of 1 which contradicts with public statements from leaders of the fda as the article points out. This is so bad that the company is actually thinking of going to China… Extremely fascinating read and a must read. Makary get your shit together, this is really embarrassing. The FDA needs change immediately, if that doesn’t scream that Makary is the wrong guy for this job I don’t know what is. The manufacturing requirement, rather than the clinical evidence, is now the gating issue. @RepAuchincloss @SenRonJohnson @SenRickScott @SenGillibrand @WhiteHouse @FrankLuntz @SusieWiles @BeckyQuick @HDSA @HDBuzzFeed @Help4HDI @adamfeuerstein @MartinShkreli @laurencurehd @DesertDweller93 @houmanhemmati @SaraGonzalesTX

A person flew to China, got a kidney "in short order," and someone in the family wrote it like a comedy in a book ‘Larry’s Kidney.’ Jan Jekielek told @DrPhil what the author probably didn't grasp: someone was likely killed for it.

This is a human cell 🤯 We are miracle machines 👽🌎🌽

The totality of evidence is overwhelming. Makary’s FDA is crooked and $QURE AMT-130 deserves accelerated approval based on existing 3yr data. $XBI $IBB $INTC $AVGO $IBRX $SGMO $SRPT $NOW

The American economy loses between $400 to $600 billion every year due to China’s intellectual property theft. It has been described as the largest transfer of wealth in human history, and it should be stopped.

@DrToonces When you see Neuralink- has fiftyfour Burr holes Drilled in by a Robot. For $15,000 you can follow Musk at #neuralink private money sector.America.

Things Marty Makary's FDA has said out loud in 2026: • AMT-130 patients are "moneyed interests" • The drug has "morbidity associated with it" (it's brain surgery, Marty) • Sham surgery is just "one to three nicks in the scalp" These are real quotes. From the commissioner. About dying people.