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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State-of-the-art innovation hub opens in Houston Energy Corridor

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French multinational company Schneider Electric has opened a new 10,500-square-foot, state-of-the-art Energy Innovation Center in Houston.

The new facility is located in Houston’s Energy Corridor and is designed to “foster increased collaboration and technological advancements across the entire value chain,” according to a news release from the company. The new Houston location joins Schneider's existing innovation hubs in Paris, Singapore and Bangalore.

The venue will serve as a training center for process control engineers, production superintendents, manufacturing managers, technical leads and plant operations personnel. It can simulate various real-world scenarios in refineries, combined-cycle power plants, ethylene plants, recovery boilers and chemical reactors.

It includes an interactive control room and artificial Intelligence applications that “highlight the future of industrial automation,” according to the release.

"Digitalization is significantly enhancing the global competitiveness of the U.S. through continuous innovation and increased investment into next-generation technology," Aamir Paul, Schneider Electric's President of North America Operations, said in the release.

Texas has over 4,100 Schneider Electric employees, the most among U.S. states, and has facilities in El Paso, the Dallas-Fort Worth metroplex and other areas.

"This flagship facility in the Energy Capital of the World underscores our commitment to driving the future of software-defined automation for our customers in Houston and beyond,” Paul added in the release. “With this announcement, we are excited to continue supporting the nation's ambitions around competitive, efficient and cost-effective manufacturing."

Schneider Electric says the new Houston facility is part of its expansion plans in the U.S. The company plans to invest over $700 million in its U.S. operations through 2027, which also includes an expansion at its El Paso campus.

The company also announced plans to invest in solar and battery storage systems developed, built, and operated by Houston-based ENGIE North America last year. Read more here.

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This story first appeared on our sister site, EnergyCapitalHTX.com.

9 can't-miss Houston business and innovation events for April

where to be

Two new conferences will launch while another longtime business competition celebrates its 25th anniversary this month in Houston. Plus, there are networking opportunities, family tech events and more.

Here are the Houston business and innovation events you can't miss in April and how to register. Please note: this article might be updated to add more events.

​Ion Block Party: Art Crawl

Network and socialize with other tech enthusiasts and business-minded individuals while taking in the new gallery at Community Artists’ Collective and experiencing the immersive dome at Omnispace360. See work by Joel Zika, who will showcase his digital sculptures through augmented reality screens, and other public art around the Ion while also enjoying food and drink.

This event is Thursday, April 3, from 4-7 p.m. at the Ion. Click here to register.

​CLA Presents: Raising Capital over Happy Hour

Gain a better understanding of the capital-raising process and various funding opportunities at this educational happy hour. Keith Davidson, the market leader for CLA in Dallas and former CFO of ICS, will present.

This event is Thursday, April 10, from 4-6 p.m. at The Cannon. Click here to register.

Rice Business Plan Competition 

The Rice Alliance for Technology and Entrepreneurship will host the 25th annual Rice Business Plan Competition this month. Forty-two student-led teams from around the world, including one team from Rice, will present their plans before more than 300 angel, venture capital, and corporate investors to compete for more than $1 million in prizes.

This event is April 10-12. Stream the Elevator Pitch Competition and Final Round here.

RSVF Annual Conference

The Rice Student Venture Fund will host its first-ever Annual Conference to celebrate the university's entrepreneurial spirit and the rising generation of student-led innovation. The conference will include live startup demos, an RSVF fund update, a keynote fireside chat, a builder-investor panel and networking. RSVF welcomes students, alumni, investors, faculty and staff, and innovators and community members of the broader tech scene.

This event is Monday, April 14, from 4-8 p.m. at the Ion. Click here to register.

​TEX-E Conference

TEX-E will host its inaugural conference this month under the theme "Energy & Entrepreneurship: Navigating the Future of Climate Tech." The half-day conference will feature a keynote from Artemis Energy Partners CEO Bobby Tudor as well as panels with other energy and tech leaders from NRG, Microsoft, GE Vernova and TEB Tech.

This event is Tuesday, April 15, from 1-4:30 p.m. at the Ion. Click here to register.

Houston Methodist Leadership Speaker Series 

Hear from Dr. Jonathan Rogg, Chief Quality Officer and Vice President of Operations at Houston Methodist Hospital and a a practicing emergency medicine physician, at the latest Houston Methodist Leadership Speaker Series. Rogg will present "Leadership from the Bedside to the Boardroom."

This event is on Wednesday, April 23, from 4:45-6 p.m. at the Ion. Click here to register.

Ion Family STEAM Day– Let's Build a Tripwire Alarm

STEAM on Demand will host a hands-on, family-friendly engineering lesson for young ones on the Ion Forum Stairs. Kids will learn to create and test their own working alarm system. The event is geared toward those ages 7 to 14.

This event is Sunday, April 26, from 10 a.m. to noon at the Ion. Click here to register.

 Greentown Houston Fourth Anniversary Transition On Tap

Climatetech incubator Greentown Labs will celebrate its fourth anniversary with a special edition of its signature networking event, Transition On Tap. Entrepreneurs, investors, students, and friends of climatetech are invited to attend.

This event is Tuesday, April 29, from 5:30-7:30 p.m. at Greentown Labs. Click here to register.

Integrate Space Technology Into Your Small Biz

The SBA Houston District Office and the UH Technology Bridge will host a collaborative event designed to help small businesses leverage space technology for prototype development. Attendees will also hear from industry experts on resources and gain access free technical engineering assistance to help accelerate their businesses.

This event is Wednesday, April 30, from 9:30-11:30 a.m. at UH Technology Bridge Innovation Center. Click here to reserve your spot.

Texas university's innovative 'WaterHub' will dramatically reduce usage by 40%

Sustainable Move

A major advancement in sustainability is coming to one Texas university. A new UT WaterHub at the University of Texas at Austin will be the largest facility of its kind in the U.S. and will transform how the university manages its water resources.

It's designed to work with natural processes instead of against them for water savings of an estimated 40 percent. It's slated for completion in late 2027.

The university has had an active water recovery program since the 1980s. Still, water is becoming an increasing concern in Austin. According to Texas Living Waters, a coalition of conservation groups, Texas loses enough water annually to fill Lady Bird Lake roughly 89 times over.

As Austin continues to expand and face water shortages, the region's water supply faces increased pressure. The UT WaterHub plans to address this challenge by recycling water for campus energy operations, helping preserve water resources for both the university and local communities.

The 9,600-square-foot water treatment facility will use an innovative filtration approach. To reduce reliance on expensive machinery and chemicals, the system uses plants to naturally filter water and gravity to pull it in the direction it needs to go. Used water will be gathered from a new collection point near the Darrell K Royal Texas Memorial Stadium and transported to the WaterHub, located in the heart of the engineering district. The facility's design includes a greenhouse viewable to the public, serving as an interactive learning space.

Beyond water conservation, the facility is designed to protect the university against extreme weather events like winter storms. This new initiative will create a reliable backup water supply while decreasing university water usage, and will even reduce wastewater sent to the city by up to 70 percent.

H2O Innovation, UT’s collaborator in this project, specializes in water solutions, helping organizations manage their water efficiently.

"By combining cutting-edge technology with our innovative financing approach, we’re making it easier for organizations to adopt sustainable water practices that benefit both their bottom line and the environment, paving a step forward in water positivity,” said H2O Innovation president and CEO Frédéric Dugré in a press release.

The university expects significant cost savings with this project, since it won't have to spend as much on buying water from the city or paying fees to dispose of used water. Over the next several years, this could add up to millions of dollars.

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

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