How this Houston innovator is using his personal connection to ALS fuel his fight for a cure

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Daniel Barvin has a neurodegenerative disease in his near future. He joined Houston-based Coya Therapeutics to help fight for a cure to the aggressively deadly ALS. Photo via Getty Images

We can never predict how our lives will turn out, but then maybe some of us can. Genetic testing showed that I, like my grandfather, aunt, uncle and father before me, would most likely die of amyotrophic lateral sclerosis, more commonly known as ALS, and/or frontotemporal degeneration (FTD) in my 40s.

Being 36, it’s possible that fear could have overtaken my life, but instead I chose to fight for every chance to change not only my life, but the lives of millions who are suffering or may one day suffer from neurodegenerative disease.

ALS is a rare disease that robs one of their ability to control their muscles, leading them to lose their ability to walk, talk and eventually breathe. Eighty percent of cases are sporadic (of unknown origin) and 20 percent have known genetic causes.

When I learned that I carried the C9ORF72 genetic variant, a causative genetic variant for ALS/FTD) my first instincts were to help others understand their status and where they could turn for help. I saw a vacuum for resources and understanding in the genetic ALS space and I knew that thousands were suffering in darkness.

Through the efforts of many, we created the first ever nonprofit – Genetic ALS & FTD: End the Legacy – focused on fighting for the genetic ALS and FTD communities. After making great strides to fight for our rights and access to care, I was asked if I could help my current CEO, Howard Berman, commercialize Dr. Stanley Appel’s regulatory T Cell (Treg) therapy for ALS.

I joined Coya Therapeutics in 2021 as the first employee, working to build a company that would one day bring life changing therapies to patients. Coya’s therapies are based on Dr. Appel’s discovery that neurodegenerative diseases drive an inflammatory response. As inflammation rises, it damages regulatory T cells, and when Tregs are damaged, inflammation becomes a persistent condition driving degeneration and eventually death.

It was at that point that my life changed from the advocacy world to the therapeutic world. Now over three years later, we are closer than ever to making a paradigm change for how patients with ALS and other neurodegenerative diseases are treated.

At Coya, we believe that combination biologics are the future of treating neurodegenerative diseases. COYA 302 is our lead asset, which has shown promising results in a proof-of-concept study released in March of 2023. We are currently working towards a double-blind, placebo-controlled trial for COYA 302 in ALS set to kick off later this year.

I never wanted to live a life so damned by disease, but when put between a rock and a hard place, the only choice is to fight. I don’t know how my life will end, but I hope that my children will know that I faced a great challenge head on with pride and resilience.

In the end, it is the combination of both the worlds I work in that lead to better outcomes for patients, raising awareness and lifesaving research. This ALS Awareness Month, please join us and our partners like the ALS Association, End the Legacy, and I AM ALS in raising awareness about these conditions, their risks, and treatment options.

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Daniel Barvin is the vice president of operations and patient advocacy at Coya Therapeutics.

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Houston company plans lunar mission to test clean energy resource

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Houston-based natural resource and lunar development company Black Moon Energy Corporation (BMEC) announced that it is planning a robotic mission to the surface of the moon within the next five years.

The company has engaged NASA’s Jet Propulsion Laboratory (JPL) and Caltech to carry out the mission’s robotic systems, scientific instrumentation, data acquisition and mission operations. Black Moon will lead mission management, resource-assessment strategy and large-scale operations planning.

The goal of the year-long expedition will be to gather data and perform operations to determine the feasibility of a lunar Helium-3 supply chain. Helium-3 is abundant on the surface of the moon, but extremely rare on Earth. BMEC believes it could be a solution to the world's accelerating energy challenges.

Helium-3 fusion releases 4 million times more energy than the combustion of fossil fuels and four times more energy than traditional nuclear fission in a “clean” manner with no primary radioactive products or environmental issues, according to BMEC. Additionally, the company estimates that there is enough lunar Helium-3 to power humanity for thousands of years.

"By combining Black Moon's expertise in resource development with JPL and Caltech's renowned scientific and engineering capabilities, we are building the knowledge base required to power a new era of clean, abundant, and affordable energy for the entire planet," David Warden, CEO of BMEC, said in a news release.

The company says that information gathered from the planned lunar mission will support potential applications in fusion power generation, national security systems, quantum computing, radiation detection, medical imaging and cryogenic technologies.

Black Moon Energy was founded in 2022 by David Warden, Leroy Chiao, Peter Jones and Dan Warden. Chiao served as a NASA astronaut for 15 years. The other founders have held positions at Rice University, Schlumberger, BP and other major energy space organizations.

Houston co. makes breakthrough in clean carbon fiber manufacturing

Future of Fiber

Houston-based Mars Materials has made a breakthrough in turning stored carbon dioxide into everyday products.

In partnership with the Textile Innovation Engine of North Carolina and North Carolina State University, Mars Materials turned its CO2-derived product into a high-quality raw material for producing carbon fiber, according to a news release. According to the company, the product works "exactly like" the traditional chemical used to create carbon fiber that is derived from oil and coal.

Testing showed the end product met the high standards required for high-performance carbon fiber. Carbon fiber finds its way into aircraft, missile components, drones, racecars, golf clubs, snowboards, bridges, X-ray equipment, prosthetics, wind turbine blades and more.

The successful test “keeps a promise we made to our investors and the industry,” Aaron Fitzgerald, co-founder and CEO of Mars Materials, said in the release. “We proved we can make carbon fiber from the air without losing any quality.”

“Just as we did with our water-soluble polymers, getting it right on the first try allows us to move faster,” Fitzgerald adds. “We can now focus on scaling up production to accelerate bringing manufacturing of this critical material back to the U.S.”

Mars Materials, founded in 2019, converts captured carbon into resources, such as carbon fiber and wastewater treatment chemicals. Investors include Untapped Capital, Prithvi Ventures, Climate Capital Collective, Overlap Holdings, BlackTech Capital, Jonathan Azoff, Nate Salpeter and Brian Andrés Helmick.

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This article originally appeared on our sister site, EnergyCapitalHTX.com.

Rice launches 'brain economy' initiative at World Economic Forum

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Rice University has launched an initiative that will position “brain capital” as a key asset in the 21st century.

Rice rolled out the Global Brain Economy Initiative on Jan. 21 at the World Economic Forum in Davos, Switzerland.

“This initiative positions brain capital, or brain health and brain skills, at the forefront of global economic development, particularly in the age of artificial intelligence,” the university said in a news release.

The Rice-based initiative, whose partners are the University of Texas Medical Branch in Galveston and the Davos Alzheimer’s Collaborative, aligns with a recent World Economic Forum and McKinsey Health Institute report titled “The Human Advantage: Stronger Brains in the Age of AI,” co-authored by Rice researcher Harris Eyre. Eyre is leading the initiative.

“With an aging population and the rapid transformation of work and society driven by AI, the urgency has never been greater to focus on brain health and build adaptable human skills—both to support people and communities and to ensure long-term economic stability,” says Amy Dittmar, a Rice provost and executive vice president for academic affairs.

This initiative works closely with the recently launched Rice Brain Institute.

In its first year, the initiative will establish a global brain research agenda, piloting brain economy strategies in certain regions, and introducing a framework to guide financial backers and leaders. It will also advocate for public policies tied to the brain economy.

The report from the McKinsey Health Institute and World Economic Forum estimates that advancements in brain health could generate $6.2 trillion in economic gains by 2050.

“Stronger brains build stronger societies,” Eyre says. “When we invest in brain health and brain skills, we contribute to long-term growth, resilience, and shared prosperity.”

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