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

guest column

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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Rice University team develops eco-friendly method to destroy 'forever chemicals' in water

clean water research

Rice University researchers have teamed up with South Korean scientists to develop the first eco-friendly technology that captures and destroys toxic “forever chemicals,” or PFAS, in water.

PFAS have been linked to immune system disruption, certain cancers, liver damage and reproductive disorders. They can be found in water, soil and air, as well as in products like Teflon pans, waterproof clothing and food packaging. They do not degrade easily and are difficult to remove.

Thus far, PFAS cleanup methods have relied on adsorption, in which molecules cling to materials like activated carbon or ion-exchange resins. But these methods tend to have limited capacity, low efficiency, slow performance and can create additional waste.

The Rice-led study, published in the journal Advanced Materials, centered on a layered double hydroxide (LDH) material made from copper and aluminum that could rapidly capture PFAS and be used to destroy the chemicals.

The study was led by Rice professor Youngkun Chung, a postdoctoral fellow under the mentorship of Michael S. Wong. It was conducted in collaboration with Seoktae Kang, professor at the Korea Advanced Institute of Science and Technology, and Keon-Ham Kim, professor at Pukyung National University, who first discovered the LDH material.

The team evaluated the LDH material in river water, tap water and wastewater. And, according to Rice, that material’s unique copper-aluminum layers and charge imbalances created an ideal binding environment to capture PFAS molecules.

“To my astonishment, this LDH compound captured PFAS more than 1,000 times better than other materials,” Chung, lead author of the study and now a fellow at Rice’s WaTER (Water Technologies, Entrepreneurship and Research) Institute and Sustainability Institute, said in a news release. “It also worked incredibly fast, removing large amounts of PFAS within minutes, about 100 times faster than commercial carbon filters.”

Next, Chung, along with Rice professors Pedro Alvarez and James Tour, worked to develop an eco-friendly, sustainable method of thermally decomposing the PFAS captured on the LDH material. They heated saturated material with calcium carbonate, which eliminated more than half of the trapped PFAS without releasing toxic by-products.

The team believes the study’s results could potentially have large-scale applications in industrial cleanups and municipal water treatments.

“We are excited by the potential of this one-of-a-kind LDH-based technology to transform how PFAS-contaminated water sources are treated in the near future,” Wong added in the news release. “It’s the result of an extraordinary international collaboration and the creativity of young researchers.”

Axiom Space announces new CEO amid strategic leadership change

new leader

Six months after promoting Tejpaul Bhatia from chief revenue officer to CEO, commercial space infrastructure and human spaceflight services provider Axiom Space has replaced him.

On Oct. 15, Houston-based Axiom announced Jonathan Cirtain has succeeded Bhatia as CEO. Bhatia joined Axiom in 2021. Cirtain remains the company’s president, a role he assumed in June, according to his LinkedIn profile.

In a news release, Axiom said Cirtain’s appointment as CEO is a “strategic leadership change” aimed at advancing the company’s development of space infrastructure.

Axiom hired Cirtain as president in June, according to his LinkedIn profile. The company didn’t publicly announce that move.

Kam Ghaffarian, co-founder and executive chairman of Axiom, said Cirtain’s “proven track record of leadership and commitment to excellence align perfectly with our mission of building era-defining space infrastructure that will drive exploration and fuel the global space economy.”

Aside from praising Cirtain, Ghaffarian expressed his “sincere gratitude” for Bhatia’s work at Axiom, including his leadership as CEO during “a significant transition period.”

Bhatia was promoted to CEO in April after helping Axiom gain more than $1 billion in contracts, Space News reported. He succeeded Ghaffarian as CEO. Axiom didn’t indicate whether Bhatia quit or was terminated.

Cirtain, an astrophysicist, was a senior executive at BWX Technologies, a supplier of nuclear components and fuel, for eight years before joining Axiom. Earlier, Cirtain spent nearly nine years in various roles at NASA’s Marshall Space Flight Center in Huntsville, Alabama. He previously co-founded a machine learning company specializing in Earth observation.

“Axiom Space is pioneering the commercialization of low-Earth orbit infrastructure while accelerating advancements in human spaceflight technologies,” Cirtain said. “I look forward to continuing our team’s important work of driving innovation to support expanded access to space and off-planet capabilities that will underpin the future of space exploration.”

Among other projects, Axiom is developing the world’s first commercial space station, creating next-generation spacesuits for astronauts and sending astronauts on low-Earth orbit missions.

Houston billionaire benefactors will donate almost entire fortune to charity

Giving Back

Houston billionaires Rich and Nancy Kinder plan to donate an astounding 95% of their multi-billion-dollar wealth to charities, they told ABC13's Melanie Lawson.

The news comes as the Kinder Foundation announced an $18.5 million expansion project for Emancipation Park in the heart of Third Ward. That historic park was founded by slaves in 1872.

The Kinders are one of the wealthiest couples in the nation, worth $11.4 billion, according to Forbes. You've certainly seen the Kinder name on buildings and facilities around the city of Houston.

The Kinders are also among the most generous, giving away hundreds of millions to Houston institutions and charities. Their plan is to give away almost all of their wealth, or more than $10 billion.

Rich Kinder helped build oil and gas pipeline giant Kinder Morgan, but he stepped down as CEO more than a decade ago for a what he calls a bigger cause.

"Well, I think we'd all like to leave the world a little better place than we found it," he said. "And we just felt early on that the right thing to do was to try to give most or all of that away. So that's what we plan to do during our lifetime and after our death."

They found kindred spirits as one of the first couples to sign The Giving Pledge, established by billionaires Bill and Melinda Gates and Warren Buffett.

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Continue reading the full story, with video, on ABC13.com.

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