In August 2021, David Meyer was working from home when a strange feeling spread through his brain. He tried to stand and couldn’t. His vision doubled. His balance vanished. Something was wrong—deeply wrong.

He called 911.

At the hospital, doctors ran tests and delivered news that would change his life: Meyer had a cavernous malformation in his brainstem. The lesion—a cluster of abnormally formed blood vessels—had bled, causing a hemorrhagic stroke.

At first, doctors believed surgery would be necessary. But because Meyer’s malformation didn’t reach the surface of his brainstem, operating would be too risky. Instead of surgery, he was monitored and then discharged.

“When you Google brainstem stroke, it gives a survival rate of like 20%,” Meyer says. “I thought I was going to die.”

Meyer, now 48, has been stable since the initial bleed, though the aftermath lingers. He has double vision, managed with prism glasses and vision therapy. He also has medical PTSD and lives with the knowledge that at any moment, the lesion in his brainstem could bleed again.

“At the time, I was like ‘holy crap! I’m the luckiest person alive,’” he says. “But, I have a 60% chance of it happening again.”

The only treatment is surgery—and for people like Meyer, whose lesions are inoperable, there is no treatment at all.

For now, at least.

What is Cerebral Cavernous Malformation?

Cerebral cavernous malformations—also called cavernomas or CCMs—are clusters of abnormally-shaped blood vessels in the brain and spinal cord. Instead of forming tube-shaped vessels, the vessels cluster into something that resembles a raspberry.

Cerebral cavernous malformation can be caused by mutations in one of three genes—KRIT1 (CCM1), CCM2, or PDCD10 (CCM3)—which are inherited in an autosomal dominant pattern (meaning that a single copy of an altered gene from one parent on a non-sex chromosome is enough to cause the condition). However, the majority of cases occur sporadically, with no clear genetic cause or family history. Approximately 0.4–0.5% of the population, or about 1 in 200 people, have a cavernous malformation, though many never know. In fact, many people never experience symptoms and only discover the malformation incidentally during an MRI for an unrelated issue.

Some individuals have only one CCM lesion, while others have hundreds. CCM symptoms vary widely depending on the malformation’s location and whether it bleeds. The risk of bleeding also depends on factors such as size or whether a prior bleed has occurred. Recent research also suggests that, in people with familial cavernous malformations, a greater number of lesions is associated with a higher risk of intracranial hemorrhage. Common symptoms and complications of CCM can include:

• Seizures
• Severe headaches
• Neurological deficits (weakness, numbness, balance problems)
• Vision changes
• Hemorrhagic stroke
• Fatigue and cognitive changes

Currently, no cure exists for CCM. Instead, CCM is typically managed with surgery, symptom control, and regular MRI monitoring. Surgery is the only definitive treatment, but it is not always possible. Lesions located deep in the brain or in eloquent areas—regions responsible for critical functions like speech, movement, or breathing—may be too dangerous to operate on. For these patients, management focuses on treating symptoms with anti-seizure medications, pain management, and regular MRI monitoring.

The Phone Call That Changed Everything

In Spring 2025, Recursion Pharmaceuticals made a difficult decision.

The company had been developing REC-994, the first drug ever tested specifically for cavernous malformation. The Phase 2 SYCAMORE trial had enrolled 62 participants across 16 sites—most recruited from Alliance to Cure Cavernous Malformation, a nonprofit patient advocacy and research organization that began in 2002 at Connie Lee’s kitchen table, between her daughter Julia’s third and fourth brain surgeries.

There was no patient organization then. No way for people with CCM to find each other or push for research. Lee started a website, and families found this valuable resource. By 2004, they held their first conference. By 2006, they had a DNA and Tissue Bank. Two decades later, the infrastructure built by the organization is what made the trial possible.

The trial met its primary safety endpoint. Efficacy data showed that 50% of patients receiving the highest dose experienced a reduction in total lesion volume, compared to 28% on placebo after 12 months. There were improvements in overall function and CCM-associated symptoms.

But the results were mixed. While the first 12 months showed promising trends, those trends didn’t continue through the long-term extension phase. Facing broader financial pressures in a difficult biotech market, Recursion decided to discontinue the program.

Lee received a phone call from Recursion’s then-CEO Chris Gibson. The news was devastating. But what happened next was unprecedented.

“They turned around and offered the asset to us,” Angela Glading, PhD, Chief Science Officer of the Alliance to Cure Cavernous Malformation, says. “A lot of drugs get shelved by pharma companies, and they don’t get offered to anybody to follow up on. We’re lucky in that regard.”

Glading spent two decades studying CCM in her academic lab at the University of Rochester before joining the advocacy organization last year, overseeing its research programs and its growing role as a drug developer.

On May 1, 2026, the Alliance signed a license agreement to acquire the rights to REC-994’s clinical trial data, the remaining drug supply, biosamples collected during the trial, and regulatory permissions to use the compound in its current form.

“This is a daunting and exciting development that moves our organization into an entirely new sphere—direct drug development,” the Alliance announced in a news release.

For a nonprofit with a $1.6 million budget, the acquisition was both an opportunity and a leap into the unknown.

“We’re becoming our own little pharmaceutical company,” Glading says. “We’re trying to figure out how to do this.”

REC-994’s Origin Story

Recursion’s AI-driven discovery platform uses machine learning to screen thousands of existing compounds against human cells engineered to display CCM-like defects. The technology identifies which drugs do the best job of restoring diseased cells to a healthy appearance.

One of those compounds became REC-994, an antioxidant designed to reduce the oxidative stress that damages blood vessels in CCM. It had already been shown to be safe in healthy volunteers in a Phase 1 trial before the Phase 2 SYCAMORE trial tested its safety and efficacy in CCM patients.

Now the Alliance to Cure Cavernous Malformation is analyzing the trial data using artificial intelligence and traditional methods to answer the question that remains: Why did some patients respond to REC-994 while others didn’t?

“If we can figure out why some people responded, and find a way to classify those people, then we could do another trial with people that we think are going to be responders,” Glading says. “That’s better than what we have now.”

The timeline isn’t short. Glading estimates it could take up to two years just to complete the analysis, and there’s no guarantee the data will yield clear answers.

“It’s very exciting,” Glading says. “We’ve announced our partnership, and I think it’s been really great. Recursion has been very generous, and they have put a lot of time into making sure this transfer goes through.”

Testing the Possibilities

The Alliance is building what Glading calls preclinical testing capacity—a resource that didn’t exist anywhere else. No academic lab is set up to test drugs for CCM, and no pharmaceutical company wants to build that capacity for a single disease.

So, the Alliance built it themselves. The CureDriver™ Lab is a preclinical treatment testing program that is testing more than a dozen compounds, both alone and in combination, in various models of CCM disease.

The goal is to have an animal-testing resource and a cell-line testing resource up and running, fully validated, by the end of the year. Initial cell-line testing is happening in a commercial lab, and promising compounds will receive in-depth animal model testing in a mouse colony at a contracted scientific research organization. The colony is expected to be fully online by the end of 2026.

The Alliance has also partnered with Atlas Discovery, a Y Combinator-backed startup using AI agents to identify drug repurposing candidates. Their system identified an existing FDA-approved drug with potential to treat CCM, and the Alliance is beginning preclinical testing.

What It Means to Be a Patient-Led Developer

Glading was drawn to the complexity of CCM at first. The genetics were complicated—three known genes, plus sporadic cases with no clear cause.

“I was interested in the puzzle that the disease presented,” she explains. “Not so much as a person who really thought about the experience of the patients and the patient narrative.”

As a researcher, she says, patients weren’t always her priority.

“As an academic researcher, I was tangentially involved with the patients, and I understood that what I was doing was eventually going to hopefully benefit them,” Glading says. “But I had a lot of other things that were priorities for me because I was trying to build my career and run my research lab and obtain funding and publish papers.”

Now, she says, the priority list has changed.

“It’s not about me,” Glading says. “It is about how I can make the biggest impact for our patients in the shortest amount of time. The details don’t matter as much as the results.”

But the Alliance’s work isn’t only about developing drugs. It’s also about building a community where patients can share their experiences and feel less alone.

Glading is one of the few employees at the Alliance who isn’t directly affected by CCM. For most of her colleagues, the disease hits close to home—they have it themselves or have watched a family member live with it. That personal stake is woven into the organization’s work.

For Meyer, the Alliance’s community was a lifeline long before it became a drug developer. After his stroke, he found the organization’s Facebook group, nearly 9,000 members strong.

“It’s really cool that there’s a space for us to go because it is a really scary thing,” Meyer says. “I met this guy from Australia on Zoom. He is 78 years old and has hundreds of them, but he’s led a very productive life. It’s just amazing to learn from other people and it gives me hope that I can live with this.”

Meyer now volunteers for the organization, doing photography and social media. He’s thought about documenting the CCM community, perhaps through a photo gallery of how people with double vision see the world or a video documentary.

“I would love to travel across the country and meet other people with cavernous malformations,” he says.

That connection—between patients, between families, between people who understand—is what the Alliance has built over two decades. The same community that supports patients through their daily struggles is now betting on itself to find a treatment.

But for a community that has watched promising treatments disappear before, the Alliance’s willingness to try matters.

“The patients were disappointed with Recursion’s decision to drop REC-994,” Glading says. “We’re trying to be as transparent as possible. We got this asset and this isn’t the end of the story. Nobody’s giving up on them.”

About the Alliance to Cure Cavernous Malformation

Founded in 2002, the Alliance to Cure Cavernous Malformation is a patient-directed nonprofit dedicated to improving the lives of people affected by cavernous malformation (CCM) and driving research toward a cure. The organization connects patients, families, researchers and clinicians through education, community support, research initiatives and advocacy. Its ultimate goal is a permanent cure for CCM that is available, accessible and affordable to all.

If you or a loved one has been diagnosed with cavernous malformation, the Alliance to Cure Cavernous Malformation offers resources, support groups, a patient registry, and a Facebook community of nearly 9,000 members. Visit alliancetocure.org to learn more.