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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UH study uncovers sustainable farming methods for hemp production

growth plan

A new University of Houston study of hemp microbes can potentially assist scientists in creating special mixtures of microbes to make hemp plants produce more CBD or have better-quality fibers.

The study, led by Abdul Latif Khan, an assistant professor of biotechnology at the Cullen College of Engineering Technology Division, was published in the journal Scientific Reports from the Nature Publishing Group. The team also included Venkatesh Balan, UH associate professor of biotechnology at the Cullen College of Engineering Technology Division; Aruna Weerasooriya, professor of medicinal plants at Prairie View A&M University; and Ram Ray, professor of agronomy at Prairie View A&M University.

The study examined microbiomes living in and around the roots (rhizosphere) and on the leaves (phyllosphere) of four types of hemp plants. The team at UH compared how these microorganisms differ between hemp grown for fiber and hemp grown for CBD production.

“In hemp, the microbiome is important in terms of optimizing the production of CBD and enhancing the quality of fiber,” Khan said in a news release. “This work explains how different genotypes of hemp harbor microbial communities to live inside and contribute to such processes. We showed how different types of hemp plants have their own special groups of tiny living microbes that help the plants grow and stay healthy.”

The study indicates that hemp cultivation can be improved by better understanding these distinct microbial communities, which impact growth, nutrient absorption, stress resilience, synthesis and more. This could help decrease the need for chemical inputs and allow growers to use more sustainable agricultural practices.

“Understanding these microorganisms can also lead to more sustainable farming methods, using nature to boost plant growth instead of relying heavily on chemicals,” Ahmad, the paper’s first author and doctoral student of Khan’s, said the news release.

Other findings in the study included higher fungal diversity in leaves and stems, higher bacterial diversity in roots and soil, and differing microbiome diversity. According to UH, CBD-rich varieties are currently in high demand for pharmaceutical products, and fiber-rich varieties are used in industrial applications like textiles.

Tom Hanks touches down at Space Center Houston for lunar film premiere

To The Moon

The Artemis Exhibit at Space Center Houston shimmered with star power as nearly 500 insiders gathered for an out-of-this-world affair celebrating the premiere of The Moonwalkers: A Journey with Tom Hanks. The immersive cinematic experience, narrated and co-written by Oscar-winning actor Tom Hanks, offers guests a front-row seat to the triumphs of past lunar missions and a look ahead to NASA’s Artemis era.

The VIP reception brought a celestial twist to the traditional cocktail hour. Guests were served shrimp and oysters, along with potato croquettes paired with peach gastrique, a playful nod to the first vegetable grown in space and the first fruit consumed on the Moon. Espresso martinis featuring Hanks’ coffee brand, Hanx, were shaken and served.

Inside the newly renovated Space Center Theater, a 270-degree projection mapping spectacle brought The Moonwalkers to life. The film weaves rare astronaut interviews with behind-the-scenes glimpses into the upcoming Artemis missions.

Following the screening, a panel discussion brought the experience back to Earth. William T. Harris, Space Center Houston president and CEO, moderated a conversation with Tom Hanks, Apollo 16 moonwalker Charlie Duke, and Artemis II astronauts Victor Glover, Christina Koch, and Reid Wiseman. Together, they explored the film’s themes and what lies ahead as humanity returns to the Moon.

The Moonwalkers: A Journey with Tom Hanks is now on view at Space Center Houston. The immersive show is included in the general admission price. It runs 50 minutes and showings begin on the half hour, starting at 10:30 am.

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A version of this story originally appeared on our sister site, CultureMap.com.

Houston space org to launch experiments aboard first mission into polar orbit

all aboard

Houston's Translational Research Institute for Space Health, or TRISH, will send its latest experiments into space aboard the Fram2 mission, the first all-civilian human spaceflight mission to launch over the Earth’s polar regions.

Fram2, operated by SpaceX, is targeting to launch Monday, March 31, at NASA’s Kennedy Space Center in Florida. The crew of four is expected to spend several days in polar orbit aboard the SpaceX Dragon spacecraft in low Earth orbit. TRISH’s research projects are among 22 experiments that the crew will conduct onboard.

The crew's findings will add to TRISH's Enhancing eXploration Platforms and ANalog Definition, or EXPAND, program and will be used to help enhance human health and performance during spaceflight missions, including missions to the moon and Mars, according to a release from TRISH.

“The valuable space health data that will be captured during Fram2 will advance our understanding of how humans respond and adapt to the stressors of space,” Jimmy Wu, TRISH deputy director and chief engineer and assistant professor in Baylor’s Center for Space Medicine, said in the release. “Thanks to the continued interest in furthering space health by commercial space crews, each human health research project sent into orbit brings us closer to improving crew member well-being aboard future spaceflight missions.”

The six TRISH projects on Fram2 include:

  • Cognitive and Physiologic Responses in Commercial Space Crew on Short-Duration Missions, led by Dr. Mathias Basner at the University of Pennsylvania Perelman School of Medicine. The crew will wear a Garmin smartwatch and a BioIntelliSense BioButton® medical grade device to track cognitive performance, including memory, spatial orientation, and attention before, during, and after the mission.
  • Otolith and Posture Evaluation II, led by Mark Shelhamer at Johns Hopkins University. The experiment will look at how astronauts’ eyes sense and respond to motion before and after spaceflight to better understand motion sickness in space.
  • REM and CAD Radiation Monitoring for Private Astronaut Spaceflight, led by Stuart George at NASA Johnson Space Center. This experiment will test space radiation exposure over the Earth’s north and south poles and how this impacts crew members.
  • Space Omics + BioBank, led by Richard Gibbs and Harsha Doddapaneni at Baylor College of Medicine. The experiment will use Baylor’s Human Genome Sequencing Center's Genomic Evaluation of Space Travel and Research program to gain insights from pre-flight and post-flight samples from astronauts.
  • Standardized research questionnaires, led by TRISH. The test asks a set of standardized research questionnaires for the crew to collect data on their sleep, personality, health history, team dynamics and immune-related symptoms.
  • Sensorimotor adaptation, led by TRISH. The project collects data before and after flight to understand sensorimotor abilities, change and recovery time to inform future missions to the moon.

TRISH, which is part of BCM’s Center for Space Medicine with partners Caltech and MIT, has launched experiments on numerous space missions to date, including Blue Origin's New Shepard rocket last November and Axiom Space's Ax-3 mission to the International Space Station last January.

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