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 investment firm names tech exec as new partner

new hire

Houston tech executive Robert Kester has joined Houston-based Veriten, an energy-focused research, investment and strategy firm, as technology and innovation partner.

Kester most recently served as chief technology officer for emissions solutions at Honeywell Process Solutions, where he worked for five years. Honeywell International acquired Houston-based oil and gas technology company Rebellion Photonics, where Kester was co-founder and CEO, in 2019.

Honeywell Process Solutions shares offices in Houston with the global headquarters of Honeywell Performance Materials and Technologies. Honeywell, a Fortune 100 conglomerate, employs more than 850 people in Houston.

“We are thrilled to welcome Robert to the Veriten team,” founder and CEO Maynard Holt said in a statement, “and are confident that his technical expertise and skills will make a big contribution to Veriten’s partner and investor community. He will [oversee] every aspect of what we do, with the use case for AI in energy high on the 2025 priority list.”

Kester earned a doctoral degree in bioengineering from Rice University, a master’s degree in optical sciences from the University of Arizona and a bachelor’s degree in laser optical engineering technology from the Oregon Institute of Technology. He holds 25 patents and has more than 25 patents pending.

Veriten celebrated its third anniversary on January 10, the day that the hiring of Kester was announced. The startup launched with seven employees.

“With the addition of Dr. Kester, we are a 26-person team and are as enthusiastic as ever about improving the energy dialogue and researching the future paths for energy,” Holt added.

Kester spoke on the Houston Innovators Podcast in 2021. Listen here

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SpaceX loses mega rocket in latest thrilling Starship test flight

Testing

SpaceX launched its Starship rocket on its latest test flight Thursday, but the spacecraft was destroyed following a thrilling booster catch back at the pad.

Elon Musk’s company said Starship broke apart — what it called a “rapid unscheduled disassembly." The spacecraft's six engines appeared to shut down one by one during ascent, with contact lost just 8 1/2 minutes into the flight.

The spacecraft — a new and upgraded model making its debut — was supposed to soar across the Gulf of Mexico from Texas on a near loop around the world similar to previous test flights. SpaceX had packed it with 10 dummy satellites for practice at releasing them.

A minute before the loss, SpaceX used the launch tower's giant mechanical arms to catch the returning booster, a feat achieved only once before. The descending booster hovered over the launch pad before being gripped by the pair of arms dubbed chopsticks.

The thrill of the catch quickly turned into disappointment for not only the company, but the crowds gathered along the southern tip of Texas.

“It was great to see a booster come down, but we are obviously bummed out about [the] ship,” said SpaceX spokesman Dan Huot. “It’s a flight test. It’s an experimental vehicle," he stressed.

The last data received from the spacecraft indicated an altitude of 90 miles and a velocity of 13,245 mph.

Musk said a preliminary analysis suggests leaking fuel may have built up pressure in a cavity above the engine firewall. Fire suppression will be added to the area, with increased venting and double-checking for leaks, he said via X.

The 400-foot rocket had thundered away in late afternoon from Boca Chica Beach near the Mexican border. The late hour ensured a daylight entry halfway around the world in the Indian Ocean. But the shiny retro-looking spacecraft never got nearly that far.

SpaceX had made improvements to the spacecraft for the latest demo and added a fleet of satellite mockups. The test satellites were the same size as SpaceX’s Starlink internet satellites and, like the spacecraft, were meant to be destroyed upon entry.

Musk plans to launch actual Starlinks on Starships before moving on to other satellites and, eventually, crews.

It was the seventh test flight for the world’s biggest and most powerful rocket. NASA has reserved a pair of Starships to land astronauts on the moon later this decade. Musk’s goal is Mars.

Hours earlier in Florida, another billionaire’s rocket company — Jeff Bezos’ Blue Origin — launched the newest supersized rocket, New Glenn. The rocket reached orbit on its first flight, successfully placing an experimental satellite thousands of miles above Earth. But the first-stage booster was destroyed, missing its targeted landing on a floating platform in the Atlantic.