STAT+: As the U.S. looks on, European countries feel growing pressure on drug prices

LONDON — In Europe, two divergent paths are emerging as countries grapple with what to do about drug prices, affecting pharma companies and patients across the continent — and testing the influence of the U.S.

In the U.K., after a pressure campaign from both pharma companies and the Trump administration, the government has adopted more industry-friendly policies while also simply promising to spend more on medicines.

Germany, another of the continent’s biggest markets, is headed in the opposite direction. Facing growing deficits in its health budget, the government has proposed moves that would cut spending and increase the fees the industry has to pay.

Continue to STAT+ to read the full story…

STAT+: The shortage of many medicines in the U.S. remains a ‘systemic’ problem, a new analysis finds

The number of prescription drug shortages in the U.S. fell by 23% last year, marking the second consecutive year of declines and the lowest level since 2017, according to a new analysis that otherwise found troubling signs about medicines that are in short supply.

For instance, the average drug shortage lasted 5.3 years, exceeding the 4.3 years seen in 2024 and greatly outpacing the average two-year shortage experienced in 2019. Moreover, nearly two-thirds of out-of-stock medicines were in short supply for more than three years, and 39% were unavailable for more than five years.

Meanwhile, the 75 drugs that were in short supply last year spanned 130 therapeutic categories, indicating that shortages affected a wide range of diseases and patient populations, according to the analysis by U.S. Pharmacopeia, an independent organization that develops standards for medicines.

Continue to STAT+ to read the full story…

Incyte to Acquire Vega Therapeutics for Up-to-$2B, Growing Hematology Pipeline with Phase III VWD Candidate

Incyte has agreed to acquire Vega Therapeutics for up to $2 billion, the companies said, in a deal designed to bolster the buyer’s hematology pipeline with antibody assets led by VGA039, a Phase III candidate for von Willebrand disease (VWD).

Vega, a wholly owned subsidiary of privately held Star Therapeutics, focuses on developing treatments for bleeding disorders. Vega’s lead candidate VGA039 could, if approved, be the first subcutaneous prophylactic therapy with a more convenient once-monthly, self-administered dosing regimen for patients with VWD, compared with current therapies requiring more frequent (2-3x/week) intravenous infusions.

VGA039 is a monoclonal antibody designed to modulate Protein S with the aim of improving hemostasis, potentially improving the body’s ability to control bleeding in numerous bleeding disorders. VGA039 is under study in the Phase III VIVID-6 trial (NCT07115004), a global single arm crossover study designed to investigate the safety and efficacy of subcutaneous administration of VGA039 as prophylaxis for bleeding in patients with every type of VWD, including those with a high disease burden.

VIVID-6’s estimated completion date is October 2028, with data expected to be read out in early 2029.

“VGA039 fits directly into our strategy of building a top-tier growth company for the future,” Incyte CEO Bill Meury said in a statement. “It is a first-in-class, Phase III asset with compelling early data, a manageable development path and the potential to become an important new growth driver in one of our core therapeutic areas, hematology. The transaction has all of the attributes we look for in business development opportunities.”

$1B+ opportunity

In a presentation to analysts Monday morning, Incyte quantified that potential market opportunity as “$1B+ global net sales opportunity.”—an estimate with which three analysts concur:

“VGA039 has the potential to address a clear unmet need for a practical, targeted therapy for von Willebrand disease, and even with conservative assumptions around pricing and market penetration, VGA039 has a clear path to a more than $1 billion market opportunity,” Matt Phipps, PhD, partner and group head of biotechnology equity research with William Blair, wrote Monday in a research note.

“Overall, we believe the deal for VGA039 fits well into Incyte’s current hematology franchise and capabilities and offers a relatively de-risked Phase III asset with blockbuster commercial potential in the 2030s,” Phipps added.

Jessica Fye, a managing director and senior equity research analyst with J.P. Morgan, was also bullish on VGA039’s commercial potential: “We think mgmt [management] framing VGA039 as a potential $1bn+ global sales opportunity is credible and think it should be able to leverage some of INCY’s existing presence with hematology centers.”

Faisal Khurshid, equity analyst with Jefferies, agreed that VGA039 “could have blockbuster potential” assuming it is priced at about $500,000/year compared with the $0.5 to $1 million range of current prophylactic therapies, and assuming ~2,000 patients at hemophilia treatment centers receive frequent IV prophylaxis out of 7,000-10,000 patients who have severe or recurrent bleeds.

“We feel that VGA039 largely fits INCY’s strategic goals and is well-positioned to succeed in Ph[ase III],” Khurshid wrote in a research note.

Despite the positive comments from analysts, Incyte shares dipped 1.7% Monday, from $102.38 to $100.64, though the stock rebounded Tuesday in early trading, rising nearly 3% to $103.31 as of 10:25 a.m. ET.

Eligible for voucher

VGA039 has received the FDA’s Fast Track, Orphan Drug, Breakthrough Therapy, and Rare Pediatric Disease (RPD) designations. The RPD designation made Star Therapeutics eligible to receive a Rare Pediatric Disease Priority Review Voucher (PRV) upon approval of a Biologics License Application for VGA039—eligibility that would transfer to Incyte if its acquisition of Vega occurs as planned. The voucher may be redeemed to obtain priority review for a subsequent marketing application or transferred or sold to another sponsor.

The Breakthrough Therapy designation was supported by interim data from the Phase I/II multidose study (NCT05776069) of VGA039 in adult and adolescent patients with VWD, showing substantial bleed reductions across all types of VWD and all types of bleeds. The data was presented at the 67th American Society of Hematology (ASH) Annual Meeting and Exposition in December 2025.

Vega’s pipeline includes two other programs, both preclinical—a complement therapy program, and an undisclosed program.

Looking beyond Jakafi®

Acquiring Vega and its pipeline is among moves Incyte has undertaken in recent months under Meury to recoup the billions of dollars in sales that it stands to lose once its aging blockbuster Jakafi® (ruxolitinib) loses patent exclusivity in 2028—one of the Top 20 Drugs Heading for the Patent Cliff through 2029, according to a recent GEN A-List.

Jakafi, marketed outside the U.S, as Jakavi®, generated $3.093 billion in net product revenues last year, up 11% from $2.792 billion in 2024. Jakafi finished the first quarter with $757.755 million in net product revenues, up 7% from $709,412 in Q1 2025.

Incyte has agreed to pay Star $1.25 billion upfront for Vega, plus up to $750 million in payments tied to achieving sales milestones.

The boards of Incyte and Star have approved the acquisition deal, through which Incyte will acquire all of Vega’s outstanding shares through a stock purchase agreement. The deal is subject to expiration of the waiting period under the Hart-Scott-Rodino Antitrust Improvements Act and other customary closing conditions.

Incyte expects to incur an R&D charge of approximately $1.25 billion, to be included in third quarter and full year 2026 GAAP and non-GAAP results, as a result of the acquisition.

However, the benefits of an acquisition by Incyte outweigh its costs, Vega and parent Star Therapeutics reason.

“This milestone reflects our team’s deep commitment to innovation and underscores our strategy to develop first-in-class and best-in-class therapies for serious conditions with high unmet need,” stated Adam Rosenthal, PhD, Star’s founder and CEO.

The post Incyte to Acquire Vega Therapeutics for Up-to-$2B, Growing Hematology Pipeline with Phase III VWD Candidate appeared first on GEN – Genetic Engineering and Biotechnology News.

Beyond the Genome: Five Emerging Leaders in Epigenetics Diagnostics

Epigenetics is increasingly powering cancer diagnostics and liquid biopsies. These emerging private companies are spurring the market with structural DNA, fragmentomics, and DNA methylation tests.

Our understanding of the role of epigenetics in disease is growing rapidly, driven by rapid advances in sequencing technology and computing.

Epigenetic processes such as DNA methylation, histone modifications, and non-coding RNA expression can interact with genomic changes to cause cancer. Therefore, diagnostics can detect early signs of disease by screening for these epigenetic signals.

Players including Illumina, Agilent Technologies, and Roche Diagnostics are leading the global market for epigenetic diagnostics, which is expected to swell by 15.5% per year from $17 billion in 2024 to $39 billion by 2030.

Growth is being driven by the increasing affordability of genome sequencing; the integration of AI tools in data analysis; growing investments; and soaring demand for liquid biopsies—noninvasive cancer tests based on blood and urine samples.

One of the first diagnostics with an epigenetic component to be approved by the U.S. Food and Drug Administration (FDA) was Exact Sciences’ (now part of Abbott Laboratories) ColoGuard® noninvasive stool test for colorectal cancer in 2014.

Since then, epigenetics diagnostics have already been generating M&A activity, with deals in the space including Cardio Diagnostics of the U.S. going public via a merger with special purpose acquisition company Mana Capital in 2022; the takeover of Ireland’s EpiCapture by compatriot Trinity Biotech in 2024; the 2023 acquisition of Germany’s Epigenomics AG by U.S.-based New Day Diagnostics; and U.S. Agilent’s acquisition of Avida Biomed, also in 2023.

There is also corporate venture interest with giants like Illumina Ventures, the Labcorp Venture Fund, and Lilly Asia Ventures making investments in small startups.

Check out below for our take on the most promising privately-owned players in the epigenetics diagnostics space, based on their investor attraction and market potential.

 

1. Arima Genomics

Founded: 2015 | Headquarters: Carlsbad, California

arima genomics logo

Arima Genomics was spun out of UC San Diego and developed research tools to pinpoint the 3D structure of DNA in cells.

However, the company pivoted to cancer diagnostics after its assay discovered vital clues on how to treat a teenage girl with glioblastoma in 2022.

Arima’s Hi-C technology involves locking the DNA structure in place via crosslinking. DNA strands are then cut with enzymes and labeled with a marker called biotin. Arima uses a process called proximity ligation to connect DNA strands that were physically close together into a single strand, and then sequences the resulting molecule.

Last year, Arima launched a lymphoma test that is delivered via the firm’s laboratory testing service, certified by the U.S. Clinical Laboratory Improvement Amendments (CLIA) program. The test is designed to be used to help patient management by discovering gene fusions and rearrangements for 417 genes in different types of lymphoma.

The test helps to fill in the gaps left by the gold standard, fluorescent in situ hybridization, which can be time- and resource-intensive and lead to conflicting results.

Arima raised $22 million in a Series C round led by Illumina Ventures in 2025 and appointed a former venture partner from Illumina Ventures as CEO. The firm is using the proceeds to launch a pipeline of clinical assays in cancer.

Arima also closed a partnership with Fox Chase Cancer Center earlier this year to co-develop diagnostic tests for lymphoma and sarcoma.

 

2. DELFI Diagnostics

Founded: 2019 | Headquarters: Baltimore, Maryland

Delfi logo

DELFI Diagnostics was founded on an “aha” moment at Johns Hopkins University School of Medicine when a group of researchers aimed to overcome the high costs and low sensitivity of traditional liquid biopsies.

The breakthrough involved hunting for the certain way cell-free DNA fragments appear in the blood. Healthy cells and cancer cells package their DNA in different patterns, reflecting changes in the cell’s genomic and epigenomic machinery.

Using this method of “fragmentomics,” DELFI’s technology can tap into orders of magnitude more data than traditional methods.

DELFI’s product FirstLook Lung uses artificial intelligence (AI) and fragmentomics technology to screen a blood sample for signs of lung cancer. It is designed as an adjunct tool to check whether patients are eligible for lung cancer screening, and is regulated under the CLIA program.

The startup’s other product, DELFI-Tumor Fraction (DELFI-TF), allows pharmaceutical companies to track the effectiveness of a cancer therapy based on a sample of less than one milliliter of plasma.

Delfi raised $5.5 million in a seed round when it was founded, with investors including Menlo Ventures and Illumina Ventures.

The startup subsequently raised a $100 million Series A round led by OrbiMed in 2021, a $225 million Series B round led by DFJ Growth in 2022, and a $34 million debt round last year.

 

3. Element Biosciences

Founded: 2017 | Headquarters: San Diego, California

Element Biosciences logo

Element Biosciences was co-founded by three former Illumina employees who dreamed of democratizing access to genomic sequencing.

The company markets devices designed to sequence genetic information at a lower cost and higher performance than traditional next-generation sequencing. These include AVITI™—its flagship benchtop sequencer—and AVITI24, which can simultaneously analyze DNA, RNA, proteins, and phosphorylated proteins.

The company generated $25 million in revenue in 2023, partly driven by orders of AVITI.

The technology, based on a process called Avidite Base Chemistry (ABC™), uses a dye-labeled polymer to bind genetic material and produce sequencing data with the need for fewer reagents than traditional sequencing.

Element is working with epigenetics specialists to boost their research offerings, including Dovetail Genomics and biomodal.

The company has also formed collaborations with diagnostics providers to enhance their offerings, including Revvity’s neonatal genetic tests and Medicover Genetics’ tests for hereditary cancers, metabolic and cardiovascular disorders, infertility, and neonatal diseases.

The company plans to market a clinical diagnostics-focused sequencing product called AVITI Dx, with EU approval expected this year in the form of a CE In Vitro Diagnostic (IVD) mark.

Element Biosciences has raised more than $680 million since it was founded, including a $277 million Series D round in 2024. The asset manager, Wellington Management, led the oversubscribed round, with participation from Samsung Electronics, Fidelity, and more.

This year, Element plans to commercialize a benchtop device, called VITARI, that can sequence a whole genome at high quality for just $100.

 

4. Nucleix

Founded: 2008 | Headquarters: Rehovot, Israel

Nucleix logo

Nucleix was initially founded to use epigenetics to trace falsified DNA in forensic investigations. Although the technology worked well, the management team decided to pivot to cancer screening.

Nucleix’s kits involve screening for specific cancer-linked DNA methylation patterns using polymerase chain reaction (PCR) tests.

The company also uses machine learning to construct biomarker panels best suited to the application of interest.

Nucleix’s Bladder EpiCheck® urine test is designed to detect the recurrence of bladder tumors based on changes in DNA methylation. It can also be used to support standard diagnostics when detecting bladder cancer in cases where malignancy is suspected.

The test has a CE mark in Europe and FDA 510(k) clearance in the U.S. for bladder cancer recurrence, meaning it can be marketed as substantially equivalent to another device in the U.S. market.

Nucleix is also developing a blood test for detecting lung tumors based on their DNA methylation signatures.

The company raised a $55 million funding round led by RA Capital Management in 2021, with participation from investors including BlackRock and corporate venture firm Lilly Asia Ventures. It followed up with a $22 million extension round in 2022.

In 2024, Nucleix sealed a strategic partnership with A. Menarini Diagnostics, part of the Italian Menarini Group, to bring its Bladder EpiCheck test to the European market.

 

5. Precede Biosciences

Founded: 2021 | Headquarters: Boston, Massachusetts

precede biosciences logo

Precede was established by a team comprising Dana Farber Cancer Institute researchers and the venture capital firm 5AM Ventures.

Precede is developing blood tests that measure signals of disease based on the genomic and epigenomic characteristics of cell-free DNA shed into the blood by tumors.

For example, the company tracks gene transcription activity and DNA methylation based on as little as one milliliter of plasma. It can then use machine learning to interpret the results and predict the optimal treatment for each patient.

Precede collaborates with drugmakers to harness its technology to inform the development of next-generation radioligand therapies and antibody-drug conjugates, which depend on the knowledge of target expression and pathway activity rather than single genomic alterations.

The research-focused product Precede Bio Insight™ is designed to track the progress of cancer, with data spanning breast and prostate cancer.

The second product, Precede Bio Dx™, also allows clinicians to select patients for clinical trials based on the blood test results.

The company emerged from stealth mode with $57 million in 2023, and followed up with a Series B round worth $83.5 million in January this year to fund the scaling of its technology as it gains commercial traction.

Among the B round’s syndicate were corporate venture investors Labcorp Venture Fund and Lilly Asia Ventures, and existing investor Illumina Ventures.

 

Jonathan Smith, PhD, is a freelance science journalist based in the U.K. and Spain. He previously worked in Berlin as a reporter and news editor at Labiotech, a website covering the biotech industry. Prior to this, he completed a PhD in behavioral neurobiology at the University of Leicester and freelanced for the U.K. organizations Research Media and Society of Experimental Biology. He has also written for medwireNews, Biopharma Reporter, and Outsourcing Pharma.

The post Beyond the Genome: Five Emerging Leaders in Epigenetics Diagnostics appeared first on Inside Precision Medicine.

The Download: whole-body rejuvenation drugs and five things to know about AI

This is today’s edition of The Download, our weekday newsletter that provides a daily dose of what’s going on in the world of technology.

David Sinclair plans to test whole-body rejuvenation drugs in the XPrize competition

The outspoken longevity scientist David Sinclair has predicted that, one day, you’ll go to the doctor and get a prescription that will make you 10 years younger. MIT Technology Review has learned of his latest step toward this: human tests of a “reprogramming” drug.

Sinclair, a biologist at Harvard Medical School, plans to launch the tests in a $101 million competition organized by the XPrize Foundation. The winners will “restore” a person to an earlier apparent age, as measured by improvements in immune, cognitive, and muscle function.

The grand prize goes to any team able to show a 10-year (or greater) relative improvement after one year of treatment. 

Sinclair says he plans to give an oral drug mixture to volunteers, in a bid to seek “evidence for age restoration in humans.” Find out how he hopes to reverse ageing through chemical reprogramming.

—Antonio Regalado

Five things you need to know about AI

—Will Douglas Heaven

At SXSW London last week, I gave a talk called “Five things you need to know about AI,” in which I shared what I think are the biggest themes in AI right now.

I pulled a few things from our first AI10 list, an annual guide to the top trends in this buzzy world, but I also veered off on several tangents. In my half-hour slot, I tried to cover the key talking points that I think help to make sense of what’s going on in tech—and thus the economy—today.  

Five key thoughts emerged: AI is everywhere all at once, it’s getting scary, a backlash is growing, it’s becoming a big deal for science—and I didn’t even need to show up at the talk. Read the full story for all the details.

The must-reads

I’ve combed the internet to find you today’s most fun/important/scary/fascinating stories about technology.

1 OpenAI has confidentially filed for a US IPO
The listing could come as early as September. (Reuters $)
+ OpenAI is targeting a valuation of up to $1 trillion. (Financial Times $)
+ The IPO will test investor appetite for AI companies. (WSJ $)
+ The move follows IPO filings from Anthropic and SpaceX. (CNN)

2 The US claims BYD, Baidu, Alibaba, and others are aiding China’s military
The Pentagon added them to a list of military-linked companies. (WSJ $)
+ The designations limit their operations in the US. (BBC)
+ The new additions also include humanoid firm Unitree. (TechCrunch)
+ The Pentagon is adapting to China’s tech rise. (MIT Technology Review)

3 Apple’s long-awaited AI overhaul of Siri is finally here
Siri AI” promises to be a more conversational assistant. (NYT $)
+ It includes a standalone app and screen-reading features. (Reuters $)
+ And arrives after two years of repeated delays. (Axios)

4 The White House and Congress are working to limit state AI laws
A new deal would curb state rules for federal legislation. (Axios)
+ AI regulation has divided US politicians. (MIT Technology Review)

5  Meta is launching a “workforce academy” for building data centers
The five-week program is free of charge and guarantees a job. (WSJ $)
+ It arrives shortly after Meta laid off 8,000 employees. (NPR)

6 Taiwan is mulling curbs on AI chip exports to China

The new controls would further align with US restrictions. (Bloomberg $)
+ Future AI chips could be built on glass. (MIT Technology Review)

7 Meta has quietly removed face-recognition code from its smart glasses app
The code identified by investigators has disappeared. (Wired $)

8 Humanoid robots are edging towards the battlefield
American and Chinese militaries are pursuing the tech. (BBC)

9 The world’s first wind-powered underwater data center has launched
It uses less power and water than land-based equivalents. (Guardian)

10 You could get some benefits of sleep without having to nod off
If new brain stimulation works as well on humans as on mice, that is. (New Scientist $)

Quote of the day

“You’re on the train, but you know that there’s no destination.”

—Clara Shih, a former top AI executive at Salesforce and Meta, tells the New York Times that AI training can’t keep up with the field’s advances.

One More Thing

biomilq concept illo

ILLUSTRATIONS BY AMRITA MARINO


Inside the race to make human sex cells in the lab

An embryo forms when sperm meets egg. But what if we could start with other cells—if a blood sample or skin biopsy could be transformed into “artificial” sperm and eggs? What if those were all you needed to make a baby?

That’s the promise of a radical approach to reproduction. Scientists have already created artificial eggs and sperm from mouse cells and used them to create mouse pups. Artificial human sex cells are next.

The advances could herald the end of infertility, but they raise major scientific and ethical challenges. 

Read the full story on the new recipes for sperm and eggs.

—Jessica Hamzelou

We can still have nice things

A place for comfort, fun, and distraction to brighten up your day. (Got any ideas? Drop me a line.)

+ These chefs turn Pop-Tarts into the desserts that inspired them.
+ A choir has beautifully transformed System of a Down’s “Chop Suey!”
+ Scientists finally traced crabs’ sideways walk in this fascinating study of evolution.
+ This nostalgic essay on the family computer is a touching throwback to early internet life.

Top image credit: Stephanie Arnett/MIT Technology Review | Getty Images

Please send Pop-Tarts to hi@technologyreview.com

You can follow me on LinkedIn. Thanks for reading!

—Thomas

Awakening from the Trance

This blog was originally posted by the TLC Foundation for BFRBs

Trichotillomania touches on all levels of human experience, from the neurological to the spiritual. It represents the interactions of brain chemistry, but also habituated physiological responses, sensory processing, behavior patterns, characteristic emotional states, perceptual styles and beliefs, and the sense of interconnectedness with others and the experience of faith. It is more than just a behavior, although it is most apparent when it manifests itself in that way.

Trichotillomania can be treated at all of these levels through different treatment approaches: medication, relaxation and response prevention, behavior modification, hypnotherapy, psychotherapy, cognitive therapy and visualization, group therapy and spiritual practices. The most effective approach will depend on the specific needs and circumstances of each individual at specific times, as well as on the compatibility of the personalities of the treatment provider and patient/participant.

In this article I will present my own view of treatment with a particular focus on how to understand and address the aspect of trance.

“Trance” is not a clinical term, but it is one which most pullers seem to recognize immediately as a significant part of the hair pulling experience: particularly when reading or watching TV. However, I believe that any time one is pulling, one has entered a trance state and that trance states occur with great frequency even at other times. To look at how to make use of this concept I will first describe what I think treatment needs to address.

Trichotillomania as a symptom: My approach is to look at what the behavior of pulling means to a particular person, and what it means about them. I view pulling as a symptom which indicates something about what is going on in that person’s life and can be best understood if we look at the context in which it occurs – both over time (how did it evolve), and ecologically (how does it fit into the network of the person’s relationships, commitments, self-perceptions, experiences of their own body and emotional states, etc.).

Symptoms are an indication of the existence of some other process. Just as a fever may reflect a viral infection, a repetitive behavior reflects an underlying mental activity. The symptom develops in response to the activity and one of its functions is to achieve some control over the consequences of that mental activity. I believe that trichotillomania indicates an attempted solution to a psychological challenge (or opportunity) one is facing in one’s life. However, it is an ineffective solution for two reasons. Firstly, it doesn’t alter the situation which has become challenging, and so the underlying causes remain unchanged. Secondly, by drawing attention onto itself it obscures those underlying causes. It distracts attention from them.

But the behavior, none the less, does have some purpose and utility. It relieves the anxiety of becoming too aware that there are challenges and opportunities which one feels unprepared to confront.

The role of emotions:

The mechanism which could be drawing one’s attention to these challenges and opportunities is the experience of emotional reaction. Emotions serve to amplify our perceptions of situations by making the good seem better and the bad seem worse. In that way, they lead us to focus on what is important to us so that we will take action. Being able to notice and interpret our emotions is something we learn as we grow up. Emotions represent a kind of language for helping us make meaningful choices as we engage with life.

But if these emotions were felt to be too overwhelming – if what they indicated felt too bad to be tolerated because we did not learn how to resolve the situations they drew attention to – then we eliminated them from our emotional vocabulary and we restricted our awareness of them. Now, when those situations reoccur, rather than notice our feelings of hopelessness and helplessness, we may turn to other mechanisms, more basic ones rooted in physical sensations, to occupy ourselves and restore some sense of order to the world.

So, in this model, the behavior of hair pulling is not an indicator of psychological inadequacy, but rather a lack of awareness. It reflects a split between awareness/thoughts and sensations/feelings. It is the result of an unknown mental process, something one has not been able to assimilate into one’s conscious thought, for which no words or language have been developed.

If this could be understood then I believe there would be less justification for feelings of shame connected with Trichotillomania, because Trichotillomania represents an underlying process outside of personal awareness, and thus is not something voluntarily chosen. (It would also answer the following disturbing statement frequently made to hair pullers: “You could stop if you really wanted to.”)

I have so far described how emotional activity and unconscious thoughts affect us in ways which we do not recognize. Despite this lack of recognition, we still need to adjust to them and regulate or organize ourselves. A good example of this is the way in which a fussy baby, if not picked up or fed when it wants to be, learns to get its thumb into its mouth and suck on it. It is finding a way to organize its reactions to its world by retreating into an attitude of self-sufficiency. In this way it solves the problems of the conflict it experiences between the emotions it feels and the lack of a way to take effective action about them in the outside world. It restores order by returning to a sensation-based activity which it has control over. It has learned to retreat into a trance.

The similarities between this example and the experience of hair pulling are striking. So how is Trichotillomania like a trance, exactly?

Trance:

The (Oxford) dictionary defines “trance” in these ways: a suspension of consciousness; a state of mental abstraction from external things; absorption, exaltation, rapture, ecstasy. Going into a trance is turning away from the world, suspending engagement with it, and entering a twilight zone of self-enchantment. The experience is one of being in between states: neither in one’s own mind, nor aware of one’s body. One has turned away, both from the rest of the world and from the rest of oneself.

It is a state in which one doesn’t think about what one feels, and doesn’t act on what one feels. One has turned away from the parts of the self which are concerned with action and purposefulness. In the trance state, a part of the personality takes over which doesn’t care about anything (except the act of pulling) and ignores the existence of time or consequences to one’s actions. It is the opposite of the perfectionist attitude so common to many hair pullers. Becoming entranced in the act of reading, for example, one detaches from the here and now, and allows this part of the personality to “come out”: while the cat’s away, the mouse plays. It is a secure, dependable, magical place in which one can avoid dealing with the stimulation of one’s spontaneous emotional responses to life.

If we look again at the role of emotions as amplifiers of perceptions, we see that what is happening in this state is that one is neither thinking about, nor acting on, what the emotions could be indicating. And as they indicate what is important so that action can be taken, the trance state eliminates the possibility of taking the action required.

How does this detaching process become chronic?

I believe it is the result of repeated experiences of failing to take effective action on what one’s emotions tell one is important. This failure can have many causes, but the result is that these important situations become perceived as challenging and threatening because they are felt as over stimulating. To protect oneself from discomfort, one disassociates from the situation. The part of oneself which perceives or feels what is going on is split off from consciousness. What remains conscious is the part which doesn’t feel and which preserves a sense of order and calm. Gradually, a gap develops between this external presentation of the self – as coherent, caring, positive – and an inner state of feeling confused, frustrated, and overwhelmed.

A false self develops, a self which appears to be more in control than is actually felt, and which one tries to believe in. The fear of having this façade penetrated adds greatly to the level of stress felt by hair pullers. Because this false self cannot be dropped when one’s gut reactions tell one to, one becomes trapped in a vicious circle that leaves one over stimulated (including the times when one merely seems to be bored), detaching from one’s body, and trying to regain control. A strong need is felt to reconnect to the body and feel grounded.‍

Trichotillomania as a return to the body:

The route to feeling in one’s body again is through becoming hyperaware and hypersensitive to sensation. This is a more basic and elementary experience of oneself: one cannot think or feel what is happening, so one uses a physical behavior to establish a link between unconscious inner experience and being in the real, physical world. This provides a solution to the twilight state of feeling detached. The sensation-focused behavior provides a substitute sense of being connected, and its ritualistic aspect creates a sense of soothing order rather than chaos.

So, looked at in this way, the act of pulling a hair actually represents the second stage of entering into a trance. The trance is triggered by the habitual reaction of disassociating rather than facing a situation which one perceives as overwhelming. But while an attitude of order and calm is being adopted (a state of “mental abstraction”), the experience of being detached from the feelings in the body becomes disorienting and the urgent need is felt to focus on the sensation of touching, playing with, and pulling hair. This provides the experience of concreteness and connectedness which allows the trance to continue.

Awakening:

What is needed is a process for regaining consciousness and turning back to engaging with life. How does one wake up? How can one build a sort of observational platform from which to watch the process of entering into a trance; one which can be separate from the process itself? I would suggest that rather than start with the ultimate goal of avoiding trance states altogether (which may be unreachable), a more pragmatic approach would be to learn how to wake up once one starts.

When we drive long distances on freeways and our attention wanders, we sometimes find ourselves drifting over into the next lane. If there were raised lane markers on the road, they would then alert us by causing a noise and a vibration as the car drove over them. That is the kind of alarm system we are looking for. It doesn’t prevent our minds from wandering, but it brings us back to the here-and-now experience before we get into trouble.

Such a system does exist: it is the sensation of a hair being pulled out. Once one hair is pulled, the opportunity exists to break the trance. That hair can be a signal to come back to the here and now rather than getting into the trouble of starting a pulling binge. (The goal of stopping at one hair pulled would also very likely include the benefit of making it much easier to commit to a realistic process of bringing the behavior within tolerable limits.)

How can one learn to stop at just one? Setting such a goal becomes much more possible if one understands one’s reasons for avoiding the goal until now. I have discussed in this article how Trichotillomania is a process which provides an attempted solution to an underlying tension. There is an inevitable anxiety about relinquishing a familiar, dependable behavior. A part of oneself therefore resists changing it and depends on the benefits it brings. This part has no intention of allowing any changes to occur unless one is prepared for the emotional experiences that follow, and it protects one from them.

A way to understand this resistance to change would be to think of the patterns of our behavior as a balanced mobile hanging from the ceiling. All its parts are interconnected and form a stable pattern. If we remove one of the parts, all of the others start to swing wildly until they settle into a new, substantially different formation. The intermediate stage of unbalanced, indeterminate movement could be likened to the feeling of overstimulation from one’s emotions when the ritualistic trance is denied.

To prepare for this change, an expanded awareness of emotional experience and what it teaches is indispensable. The remainder of this article offers some suggestions for work that can be done alone to expand this ability. This task is made much easier and more effective, however, when it is done in the context of a healing dialogue: either in individual or group therapy, or in a support group. This option deserves serious consideration because the act of communicating to another person helps bring one’s inner experiences into focus. Additionally, when there is the trust that the other person is willing not only to listen but to actively attempt to grasp what the speaker means from the speaker’s own point of view, the feeling of validation and recognition received makes awareness of the emotional states more bearable.

Reading the signals:

Part of the personal preparation which can be done is to establish intent to learn from what is found when one tries to read the signals. This would require a willingness to recognize that there are good reasons for what one feels rather than prejudging emotions as wrong, inappropriate, or proof of all the “bad” things one has come to believe about oneself. It also requires a willingness to feel discomfort, hurt, and vulnerability so that there can be a return to wholeness and the sense of being fully alive.

1. The most direct step is simply to ask yourself questions such as: What am I feeling? What is on my mind? Is something bothering me? What do I want right now? Is there something I should be doing? Special attention should be paid to the first answer that comes to mind, even if it very quickly disappears or seems insignificant. You should have an open mind and be prepared to be surprised. Before asking yourself these questions, stop the activity you are doing, if possible. If answers do not emerge the following techniques can be tried.

2. Let your body speak. Allow yourself to become aware of where you feel tension or discomfort. Imagine that that part of you has a voice and can answer the questions in Step One. Try asking follow-up questions to learn more.

3. Try exaggerating the physical state that you are in. That is, whatever movement your body is making or would like to make, take it to an extreme as if you were a very melodramatic actor or dancer who had no inhibitions. Again, think about how your body is expressing answers to the questions in Step One.

4. Visualize yourself as a child of about five and ask the questions of her or him. The answers should seem to be in the language of a 5-year-old. It might help to hold an object such as a cushion or stuffed animal to you as you try to make contact with yourself in this way. It also might help to combine this with some exaggeration of body expression. Additional questions you might ask could be: What do you need from me? Is somebody upsetting you? (See Reference 1.)

5. Write a question to the child, then switch your pen to your other hand and write the answer with that hand. You should write very quickly and with no attempt to make the writing more legible. Then switch your pen back to your original hand for a further question. Continue the dialogue, and the switching of hands, until no further clarification is necessary. The purpose of this technique is to facilitate the spontaneous flow of ideas. (See Reference 2.)

6. Write out the questions as complete sentences to be completed and complete the same question five times as quickly as possible. The questions would be rewritten as follows: Right now, I want….; or: I am upset because…. Allow any response to come forward. Often, a few unrevealing responses will be followed by one unexpected and more valuable one. (See Reference 3.)

7. Hold the hair which has just been pulled out and ask yourself: What did this hair give itself up for? A significant reason for the failure to stop hair pulling is the frequent presence of trance states, which enable one to deny the consequences of the behavior. Additionally, the experience of trance encourages one to focus on physical sensations such as the feeling of a hair being pulled, so as to achieve a greater sense of being connected to reality.

I have described how one enters a trance when certain situations trigger a habituated expectation of becoming overwhelmed. In self-defense one suspends consciousness of the challenge and retreats into a state of emotional detachment. The alternative to the trance, then, is to identify and assimilate the emotional cues about the situation so that appropriate action can be taken. The sensation of the first hair being pulled can serve as an alarm to awaken one from the trance and begin this process of self-evaluation and a return to an alert engagement with life.

Reference 1: Margaret Paul. Inner Bonding. San Francisco: Harper Collins, 1990.Reference 2: Lucia Cappachione. The Power of Your Other Hand. North Hollywood, CA: Newcastle Publishing, 1988.Reference 3: Nathaniel Branden. How to Raise Your Self-Esteem. New York: Bantam, 1987.

The post Awakening from the Trance appeared first on International OCD Foundation.

Tics and OCD: Why Treatments Differ and Ways to Support Your Kids

by Dr. Christine Conelea and Dr. Adrienne Manbeck

Tics, compulsions, and obsessions are part of many people’s everyday lives. As clinicians and researchers at the University of Minnesota Tic and Compulsivity Lab (MnTiC), we see people living with different, unique combinations of these symptoms that can feel interconnected. There are some broad differences between tics, obsessions, and compulsions, but it’s important to note that they do overlap and that a person can have all of these things at the same time. Still, disentangling symptoms in order to provide effective treatment can sometimes be challenging. 

Tics and compulsions are similar in that they both involve movements that are repetitive and difficult for the person to control. Research has shown that overlapping genetic, neurological, and psychological factors contribute to both experiences. Because of this, some researchers and clinicians consider both tics and compulsions to be on the “obsessive-compulsive spectrum.” However, there are important differences in treatment and in how loved ones can provide support.

Behaviors

Tics are sudden, repetitive, involuntary movements or sounds that are usually very brief.   Common tics include rapid or hard eye blinking, facial scrunching, throat clearing or sniffing. In our studies, we have found that people with tics have an average of 8 tics per minute. 

Many individuals with tics experience an urge right before they tic. This urge can feel like tension, an itch or pressure that typically goes away after the tic occurs. Tics tend to   wax and wane over time. Compulsions are often more rule bound or rigid and are driven by a thought. Common compulsions include checking, counting, washing and reordering. They tend to be longer, smooth movements or sequences of movements. They’re linked to very specific situations, triggers, or thoughts to prevent something bad from happening or to relieve anxiety. Compulsions can also be done in one’s head–like reviewing a memory or providing yourself reassurance.

Why Treatments Differ

Although tic disorders and OCD sometimes look similar on the surface (repetitive movements can occur in both), they are different disorders. Subjectively speaking, tics can feel like a “body itch” while compulsions might feel like a “brain itch.” Though they may be very connected for some people, what works for one won’t necessarily work for the other. 

In general, we often take a less interventionist approach to tic disorders because tics may not be inherently harmful. On the other hand, because compulsions work to reinforce obsessive thoughts and provide escape from non-harmful but unpleasant feelings, we often intervene with OCD as soon as possible. As clinicians working with children and teens, we want to help kids learn to be brave, learn that they can tolerate distress associated with anxiety, and learn that OCD doesn’t get to make their decisions for them. 

Watchful Waiting

In general, OCD will not get better on its own. If a parent notices symptoms associated with distress or impairment, taking action of some kind is often the best approach. If tics aren’t causing problems for a child, it might be best to monitor. If tics become painful, start to bother your child, or in some other way cause harm, that might be the time to pursue treatment. The American Academy of Neurology refers to this as “watchful waiting” and sees it as an appropriate treatment, in some cases, for tics.

Tips for Providing Support

People with tic disorders face high stigma and discrimination compared to the general population. Tics are often hyper-visible and poorly understood. For OCD, stigma is more likely to emerge from public messaging rather than hypervisibility. The general public talks about OCD in a highly stereotyped way that misses a lot of people’s actual experiences with OCD and can trivialize symptoms. 

For both OCD and tic disorders, parents can help support their child by collaboratively developing a reward structure for hard work in therapy.

For tic disorders, research has shown that situational factors have an important role in influencing tics, including what a person is doing, who is around them, and how they are feeling. Most people can identify situational factors that make their tics better or worse. Some factors frequently associated with tic exacerbation are fatigue, social events, and starting school in the fall. Stress, frustration, or anxiety-provoking events can make it harder for the brain to inhibit tics. Events frequently reported to coincide with tic reductions include social interactions with familiar people, situations in which the individual is a passive participant or deeply focused on a task, and leisure activities. 

Because tics are so reactive to situational factors, one of the best ways to provide support is to create tic-neutral environments. This means eliminating intended or unintended consequences related to the tics, such as minimizing reactions to tics or changes to activities because of tics. We frame this as, “focusing on the person instead of the tics.” Tic neutrality can also help children feel better about tics since they can’t control them. 

For OCD, minimizing parent accommodation, or the things that parents do to help their kids avoid feeling anxious, can be helpful. Parents can help their kids by reducing accommodation and encouraging their children to be brave and face their fears in manageable, developmentally-appropriate ways.


About the Authors:

Christine Conelea, PhD is an Associate Professor in the Department of Psychiatry & Behavioral Sciences at the University of Minnesota, a licensed clinical psychologist, and the director of the MnTiC Lab. Dr. Conelea’s research interests include Tourette Syndrome/tic disorders, obsessive-compulsive disorder (OCD), and anxiety disorders. She is particularly interested in understanding how the brain, environment, and psychosocial factors interact to impact symptoms and treatment outcomes.

Adrienne Manbeck, PhD, is a postdoctoral fellow in the MnTiC Lab. Dr. Manbeck earned her doctorate in clinical psychology at the University of Minnesota and completed her pre-doctoral internship at Allegheny General Hospital in Pittsburgh, PA. Dr. Manbeck’s research aims to better understand the development, maintenance, and treatment of OCD and anxiety disorders across the lifespan, with a particular emphasis on the impact of societal stressors on these disorders, including the ways in which societal stressors impact symptom severity, access to high-quality treatment, and impact of treatment on symptoms.


More Reading:

Micali, N., Heyman, I., Perez, M., Hilton, K., Nakatani, E., Turner, C., & Mataix-Cols, D. (2010). Long-term outcomes of obsessive–compulsive disorder: Follow-up of 142 children and adolescents. British Journal of Psychiatry, 197(2), 128–134. 

Conelea, C.A., Woods, D.W., Zinner, S.H. et al. The Impact of Tourette Syndrome in Adults: Results from the Tourette Syndrome Impact Survey. Community Ment Health J 49, 110–120 (2013).

Tourette Association of America Tourette Awareness Month resources

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Negative Online Experiences Are Common but Often Go Unreported Among Youth With Mental Health and Neurodevelopmental Concerns

New Child Mind Institute study finds more than one in four youth experienced a negative online experience in the past year, yet only one in five reported the incident through platform tools.

New York, NY — A new study from researchers at the Child Mind Institute finds that negative online experiences are common among children and adolescents with mental health and neurodevelopmental conditions, and that most incidents are not reported through platform reporting tools.

Published in JAACAP Open, the study examined negative online experiences among 1,009 youth ages 9 to 15 with a history of mental health or neurodevelopmental concerns, all of whom were current or previous participants in the Child Mind Institute’s Healthy Brain Network. More than one in four reported at least one negative online experience in the past year. Among those who had such an experience, nearly 69% reported multiple incidents, yet only 20% reported the incident through platform reporting tools.

The study defined “negative online experience” as any unwanted or uncomfortable experience while online, including cyberbullying, cyberstalking, doxxing, impersonation, sexual harassment, and related forms of digital harm. The research used a mixed-methods design, combining a quantitative survey with an in-depth qualitative follow-up involving a three-day moderated online bulletin board with a subset of participants.

“These findings point to a large and often hidden problem,” said Michael P. Milham, MD, PhD, Chief Science Officer at the Child Mind Institute and senior author of the study. “Many young people are encountering harmful or uncomfortable experiences online, but the systems designed to help them often do not receive a report. That creates a major gap for parents, educators, clinicians, and platforms trying to keep children safer online.”

The research team identified three major categories of barriers that prevent youth from reporting negative online experiences: reporting process barriers, such as not knowing how to make a report; reporting policy barriers, including uncertainty about what qualifies for reporting or how platform rules apply; and emotional barriers, such as embarrassment, fear, and worry about consequences.

The study also found that reporting decisions were often shaped by how young people interpreted the incident itself. In the qualitative follow-up, youth considered whether the harmful behavior seemed intentional, how malicious it appeared, and how severe or repeated the harassment was. When those cues were ambiguous, youth were less certain about whether reporting was appropriate.

“Reporting is not simply a matter of telling young people to speak up,” said Mirelle Kass, lead author of the study. “Youth are making complicated judgments about intent, severity, platform rules, and the possible consequences of disclosure. If we want young people to report harmful experiences, the tools and systems around them need to be clearer, safer, and easier to use.”

The findings suggest that online safety efforts should be tailored to the needs of youth who may already be managing mental health, developmental, or social challenges. Social aptitude, mental health symptoms, and parenting style were associated with youths’ likelihood of encountering negative online experiences and with the barriers they faced when deciding whether to report them.

Participants also expressed a clear desire for better tools and guidance. Most youth wanted platforms to provide more information about how to protect themselves online, how to use safety features such as blocking and reporting, and how to access support during and after the reporting process.

“Families, educators, clinicians, policymakers, and technology developers all have a role to play,” said Dr. Milham. “We need reporting systems that children can understand, policies that are transparent, and trusted adults who can respond without blame or overreaction. Safer digital spaces will require more than awareness. They will require systems designed around how young people actually experience online harm.”

The study underscores the importance of developmentally appropriate safety tools, clearer platform policies, and stronger support systems for youth navigating digital spaces. For children and adolescents with mental health and neurodevelopmental conditions, improving reporting pathways may be an important step toward reducing hidden online harms and building safer online environments.

This research was supported by funding from Google LLC’s User Safety team to the Child Mind Institute for work led by Michael P. Milham, MD, PhD.


About the Healthy Brain Network

The Healthy Brain Network is a community-centered research initiative from the Child Mind Institute that collects clinical, cognitive, behavioral, and neurobiological data from children and adolescents in the New York City area. Families who participate receive feedback and diagnostic consultation while contributing to open science research aimed at improving understanding of child and adolescent mental health.

About the Child Mind Institute

The Child Mind Institute is an independent nonprofit organization dedicated to transforming the lives of children and families struggling with mental health and learning disorders. Through cutting-edge research, evidence-based clinical care, and public education, the Child Mind Institute builds open science platforms and digital tools to accelerate discovery and improve youth mental health worldwide.

For press questions, contact cmiscience@ssmandl.com or mediaoffice@childmind.org.

The post Negative Online Experiences Are Common but Often Go Unreported Among Youth With Mental Health and Neurodevelopmental Concerns appeared first on Child Mind Institute.

Centering People, Centering Stories: Folklore as an Unlikely Ally in the OCD Misdiagnosis Crisis

By: Rebecca Bernstein, MA Folklore

The International OCD Foundation’s (IOCDF) recent landmark white paper reveals more than 80% of OCD cases in America remain undiagnosed (International OCD Foundation, 2025). Considering the size of this clinical challenge, it might seem odd to suggest that a small, humanities-based field like folklore— yes, folklore — has any role to play in the solution. As someone who studies OCD personal narratives (stories people tell about their lived experiences), my research suggests otherwise. In a situation that invokes the feeling of all-hands-on-deck, the tools and perspectives of this field may offer more benefit than we might initially give it credit for.

Folklore is the study of informal, creative communication. Dr. Lynn McNeill describes it as anything people “say, do, make, or believe” (McNeill, 2013). Folklore includes everything you’d think of (quilts, traditional music, fairy tales) and a lot of things you wouldn’t (occupational culture, gossip, internet memes.) We find examples of folklore everywhere. It’s in our holidays and our hobbies, our food and our fads, our jokes and our grieving. Folklorists study the infinite ways people express themselves in daily life. This, in turn, helps us better understand the cultural realities in which they live. And because what we “say, do, make, or believe” describes most of human behavior, the folkloric lens can be an indispensable one with which to investigate the world.

The benefit of studying how people express themselves is obvious when we recognize that in mental health, conversation and narrative are the primary tools we use to give and receive care. OCD isn’t just a diagnosis. It’s also a fundamentally creative experience. (Creative things don’t necessarily have to be beautiful, pleasing, or even wanted. They just have to be new and meaningful.) (Dictionary.com, 2023). Although ego-dystonic, extraordinary beliefs and elaborate rituals are hallmark features of OCD. When sufferers discuss their experiences, they are naturally inclined to do so through their own personal and cultural lenses. Therefore, descriptions of OCD vary infinitely. If the issue is our failure to recognize OCD when it presents itself, an approach designed to make sense of something as messy as human expression may offer insights that quantitative research methods still struggle to obtain.

How Folklorists Research

Just like in biomedical research, the research methods folklorists use matter. Our goal is to better understand people and their communities. That means we strategically build relationships, listen deeply, and intentionally embrace the complexity of those we talk to.

When I started researching OCD narratives, I wanted to know: What were the internal realities like for people who lived with this illness? What made their stories distinct? And how might those stories be connected? One of the biggest challenges I faced in my fieldwork was the potential for my participants to self-censor. As someone who also lives with OCD, I knew all too well the role shame and fear could play in the choice to fully share one’s reality with others. Using both field-tested approaches and my own lived knowledge, I conducted interviews with people with OCD, approaching them in a way I hoped would ease interviewees into difficult conversations:

  • I provided anonymity. I held all interviews on Zoom, where participants were free to keep their cameras off. I also assigned each one an alphanumeric signifier (A1, B2, etc.) in my writing.
  • I emphasized the importance of story. Although I asked specific questions, I also allowed participants to go off topic and engage in two-way conversation. The story was the point.
  • I used the “kitchen table” interview method. Based on the work of Carl Lindahl, this method tries to recreate the intimacy of two individuals talking around a kitchen table. It discourages framing the interviewer as an objective party, recognizes storytellers as experts in their own experiences, and suggests that interviewers only ask questions they themselves would be willing to answer (Lindahl, 2012).
  • I disclosed. My choice to openly discuss my own OCD diagnosis with interviewees allowed conversations to proceed with a certain warmth and vulnerability.
  • I emphasized participants’ humanity. I treated each participant as a full individual rather than just a source of information. This meant I worked on a model of enthusiastic consent. It also meant I asked them for feedback on my writing to ensure I portrayed their experiences accurately.
  • I compensated participants well. Each received a $100 gift card.

The Results

The universal theme I discovered during these interviews was a profound concern with social isolation. Every single participant mentioned this issue. Interviewees shared how OCD made it difficult for them to maintain relationships and how challenging it was to hide their illness from others. They also recalled their joy and gratitude when discussing moments in which they felt understood.

Their narratives also contained four other common themes:

1.) Logic and patterns of personal concern. Participants often discussed their particular obsessions and compulsions, and the influence those specific thoughts and behaviors had on their daily lives.

2.) Issues of negotiation. People talked about navigating certain types of conflicts as a result of their illness. These conflicts generally fell into two categories: self-negotiation and existential negotiation. In the first, people struggled with the desire to take their thoughts and urges seriously despite knowing they didn’t make sense. In the second, they wrestled with their relationships to the divine.

3.) Positive approaches to the illness. Many interviewees made a point to mention the silver linings they saw in being sick. They noted how OCD made them safer, more empathetic, or provided them with particular skills. Others discussed productive choices they’d made despite living with such a debilitating condition.

4.) Interactions with medical systems. Participants talked about their experiences as patients. For some, dealing with doctors, therapists, and other health professionals helped them understand their experience or relieved their suffering. For others, these encounters were confusing, unhelpful, or even traumatizing.

It’s important to note these themes represent a truly broad range of content. Not every story included every theme, and within those themes, the specific details I heard varied as much as the individuals themselves.

Implications

Say you were to hear four stories: one about someone’s preferred cleaning routine, one about someone’s waning belief in God, one about a good decision made in a difficult circumstance, and one about a doctor’s visit. It’s unlikely you’d consider these stories connected. And yet the data shows they are. The fact that stories with dramatically different content can reflect the same illness highlights the way OCD can remain elusive and camouflaged.

The problem with recognizing these stories as OCD stories isn’t just the variation in content. It’s also in how others hear them. In folklore, we don’t just study cultural expressions. We also study how they move from person to person. “Tellable narratives” travel easily. Both speakers and listeners understand what a certain type of story should sound like and the meaning it’s supposed to convey. If I tell you a tale about a persecuted young woman who escapes a bad home life and marries a prince, you can probably guess you’ve heard Cinderella. If we’re both excited that she went from rags to riches, we share an understanding that her journey is a positive one. In contrast, an “untellable narrative” hits some kind of barrier. If you’ve never heard Cinderella before or think the stepmother is actually the hero, my meaning in telling you the story gets lost. Untellable narratives can be misinterpreted.

This misalignment between the stories people tell and the ones listeners expect to hear happens all the time. We’ve all said things misunderstood by others. Sometimes this process is harmless; other times it results in difficult consequences. Dr. Kristiana Willsey writes about veterans who censor themselves in front of civilian audiences. Because civilians usually only expect to hear tales of “war heroes” or “PTSD survivors,” veterans often choose not to tell the full and complicated stories of their service experiences (Willsey, 2015). Dr. Amy Shuman and Carol Bohmer discuss the case of rejected asylum seekers. If asylum applicants don’t tell their stories of oppression and escape in a way that fits immigration officials’ expectations of what a traumatic asylum story should look like, their applications get denied (Shuman & Bohmer, 2016). If we consider just how different any two OCD stories can be and add the public assumption that OCD is an illness of specific doings (hand washing, checking locks) rather than tellings, it highlights just how difficult it is for most of these narratives to get heard, and heard correctly.

Patient/practitioner interactions can be particularly vulnerable to this type of miscommunication. The problem with considering OCD as just a medical issue is that most people don’t think of their lives as medical events. Practitioners enter the room ready to make sense of problems in clinical terms. Patients enter with stories. They share their concerns in a way that cannot be easily separated from their personal frames of reference or cultural understandings of life. Practitioners are often taught to mistrust the details that emerge from these narratives, to kindly but efficiently work around them in order to do their jobs. But for patients, these details are how they make meaning. If misdiagnoses also occur during these interactions, it’s worth taking a closer look at what’s being lost in translation.

Folklore ultimately offers the promise of new solutions to old problems. It allows us to reconsider how we listen to patients, collect data, and address communication issues— all clear benefits in the fight for better diagnostic care. It is also equipped to help us make sense out of the lived reality of OCD— perhaps uniquely so. I see folklore as an exciting potential ally to traditional research and clinical spaces. My hope is that this partnership can help us work more effectively toward our common goals: a better understanding of OCD, and quicker ease for its sufferers.

Works Cited

Dictionary.com. (2023). Creativity. In Random House Unabridged Dictionary. Random House, Inc. https://www.dictionary.com/browse/creativity.

International OCD Foundation. (2025). America’s OCD care crisis: National findings on the failure of effective OCD treatment to research patients. International OCD Foundation. https://iocdf.org/wp-content/uploads/2025/12/Full-Report-Americas-OCD-Care-Crisis-12-9-2025.pdf.

Lindahl, C. (2012). Legends of Hurricane Katrina: The right to be wrong, survivor-to- survivor storytelling, and healing. The Journal of American Folklore, 125 (496), 139–176. https://doi.org/10.5406/jamerfolk.125.496.0139.

McNeill, L. (2013). Folklore rules: A fun, quick, and useful introduction to the field of academic folklore studies. Utah State University Press. https://muse.jhu.edu/book/27822.

Shuman, A. & Bohmer, C. (2016). The stigmatized vernacular: Political asylum and the politics of visibility/recognition. In D. Goldstein & A. Shuman (Eds.), The stigmatized vernacular: Where reflexivity meets untellability. Indiana University Press.

Willsey, K. (2015). Falling out of performance: Pragmatic breakdown in veterans’ storytelling. In T.J. Blank & A. Kitta (Eds.), Diagnosing folklore: Perspectives on disability, health and trauma. University Press of Mississippi.

The post Centering People, Centering Stories: Folklore as an Unlikely Ally in the OCD Misdiagnosis Crisis appeared first on International OCD Foundation.

Codon Optimization Isn’t Equal: Benchmarking Gene Design for Antibody Expression



Image of Justin Byers

Justin Byers

Founder and CEO
Axio BioPharma

Panelist

Image of Justin Byers

Justin Byers

Justin Byers is the founder and CEO of Axio BioPharma. He holds a BS in biochemistry and molecular biology from Illinois State University and has held leadership roles at Illumina, Danaher, and Fujifilm. Throughout his career, Byers has led commercial, operational, and cross-functional initiatives supporting biologics programs from early development through manufacturing. He has worked closely with scientific teams to scale workflows, improve process rigor, and align technical execution with strategic objectives. At Axio, Byers oversees corporate strategy, partnerships, and scientific direction. His focus is positioning the company at the intersection of structured data and biologics workflow execution. Axio is accelerating biologics development through mAb production services for R&D while partnering with innovators and CDMOs to ensure the data required for rigorous decision making and a digitally enabled future is generated, structured, and accessible.



Image of Daniel Lin-Arlow, PhD

Daniel Lin-Arlow, PhD

Chief Scientific Officer and Co-founder
Ansa Biotechnologies

Panelist

Image of Daniel Lin-Arlow, PhD

Daniel Lin-Arlow, PhD

Daniel Lin-Arlow, PhD, is a scientist-entrepreneur with deep expertise in synthetic biology and biophysics. Motivated by firsthand challenges in obtaining DNA constructs for metabolic engineering in graduate school, he is deeply committed to providing scientists with the DNA constructs they need for their research. As Ansa’s founding CEO, Lin-Arlow grew the company from two employees in 2018 to more than 70 by 2024, raising over $130 million in venture capital and grant funding to support technology development and commercialization. He transitioned to the role of chief scientific officer in 2024, where he leads the development of new applications of the company’s technologies. Lin-Arlow received his PhD from the University of California, Berkeley for his work in Jay Keasling’s lab for developing the DNA synthesis technology commercialized by Ansa. Prior to graduate school, he was a scientific associate at D.E. Shaw Research where he studied the biophysical properties of G protein-coupled receptors, including how drugs bind and modulate their activity. Dan began his scientific career at MIT, where he earned dual SB degrees in math with computer science and biology, and developed computation tools for the analysis of regulation of gene expression at the Broad Institute of MIT and Harvard. Lin-Arlow is a co-inventor of nine patent families and has co-authored scientific publications in Nature, Science, Cell, PNAS, and Nature Biotechnology.



Broadcast Date: 

  • Time: 

Antibody expression titers are key drivers of screening efficiency in discovery, developability, manufacturing economics, and development timelines. Although it is possible to address poor antibody expression by increasing overall batch size and optimizing downstream processes, the root cause often lies in the underlying DNA sequences. Controlled benchmarking studies are helpful for systematically evaluating DNA construct design decisions that impact titers.

In this GEN webinar, Justin Byers and Daniel Lin-Arlow, PhD, examine how enzymatic DNA synthesis and DNA construct design mitigate antibody expression challenges.

Byers will walk through a controlled benchmarking study of codon-optimization approaches, including details of the study design and how structured, gene-to-protein workflows can help identify optimal constructs before they become downstream problems. He will show that under matched CHO and HEK293 conditions, antibody constructs codon-optimized with an AI codon language model had consistently higher transient expression titers than other approaches. The AI codon-optimized sequences contained “complex” features such as repeats and GC skew that challenge traditional gene synthesis processes but were readily manufactured by Ansa’s DNA synthesis platform. These results suggest that complex sequence features can be important for optimal gene expression, which makes the ability to manufacture them as relevant as the codon strategy.

Lin-Arlow will present Ansa’s enzymatic DNA synthesis technology and the benefits to clients working on antibody production, cell and gene therapies, and other synthetic biology applications. Key takeaways include:

  • An AI-powered codon optimization strategy that measurably improves transient antibody expression yield
  • Why controlled side-by-side benchmarking under standardized conditions is the only reliable way to objectively evaluate DNA construct design choices
  • How integrating rigorous sequence evaluation upstream compresses timelines and reduces the risks of expression failures late in development
  • How Ansa’s fully enzymatic DNA synthesis addresses complex sequences, including: High or low GC content, secondary structures, inverted terminal repeats (ITRs), and homopolymers
  • The Ansa On-Time Guarantee—DNA orders shipped on time, or the complete order is free

A live Q&A session will follow the presentation offering you a chance to pose questions to our expert panelists.

Produced with support from:

ANSA Biotechnology logo

The post Codon Optimization Isn’t Equal: Benchmarking Gene Design for Antibody Expression appeared first on GEN – Genetic Engineering and Biotechnology News.