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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Austin company to bring AI-powered school to The Woodlands

AI education

Austin-based Alpha School, which operates AI-powered private schools, is opening its first Houston-area location in The Woodlands.

The 8,000-square-foot school, scheduled to be ready for the 2026-27 academic year, initially will serve students in kindergarten through eighth grade. Alpha says the school will offer “open workshop spaces and innovative classrooms that support personalized instruction, core academics, leadership development, and real-world life skills.”

Alpha sets aside two hours each school day for the AI-driven, self-paced study of core subjects like math, reading and science. The rest of each school day consists of life-skills workshops focusing on topics such as leadership and financial literacy.

Alpha’s school in The Woodlands has begun accepting applications for the 2026-27 school year. Annual tuition costs $40,000.

“The Woodlands is one of the most dynamic, forward-thinking communities in Texas, and Alpha is proud to bring

an innovative educational model that complements its strong academic foundation,” says Rachel Goodlad, head

of expansion for Alpha.

Founded in 2014, Alpha School combines adaptive technology-driven instruction with immersive life-skills workshops. Its model emphasizes mastery-based learning in core subjects alongside development of communication, critical thinking, financial literacy and leadership skills. It operates more than 15 schools across the country.

Elsewhere in Texas, Alpha operates schools in Austin, Brownsville, Fort Worth and Plano. Alpha also operates 12 Texas Sports Academy campuses in Texas, including locations in Houston, Pearland and Richmond, along with a NextGen Academy esports school in Austin, a school for gifted students in Georgetown, and lower-cost Nova Academy campuses in Austin and Bastrop.

Alpha has fans and critics. While supporters tout students’ high achievement rates, detractors complain about the high tuition and the AI-influenced depersonalization of education.

“Students and our country need to be in relationship with other human beings,” Randi Weingarten, president of the American Federation of Teachers, a teachers union, tells The New York Times. “When you have a school that is strictly AI, it is violating that core precept of the human endeavor and of education.”

Alpha co-founder MacKenzie Price, a podcaster and social media influencer, doesn’t share Weingarten’s views.

“Parents and teachers: We need to embrace this change,” Price wrote after President Trump signed an executive order promoting AI in schools.

The Times notes that Alpha doesn’t employ AI as a tutor or a supplement. Rather, the newspaper says, AI is “the school’s primary educational driver to move students through academic content.”

Houston researcher secures $1.7M to develop drug for aggressive form of breast cancer

cancer research

A University of Houston researcher has joined a $3.2 million effort to develop a new drug designed to attack a cancer-driving protein commonly found in triple-negative breast cancer.

Triple-negative breast cancer (TNBC) is one of the most difficult-to-treat forms of cancer and accounts for 10 percent to 15 percent of all breast cancer cases. The disease gets its name because tumors associated with it test negative for estrogen receptors, progesterone receptors and excess HER2 protein, making it difficult to target. Due to this, TNBC is often treated with general chemotherapy, which can come with negative side effects and drug resistance, according to UH.

UH College of Pharmacy research associate professor Wei Wang is developing a drug that can target the disease more specifically. The drug will target MDM2, a protein often overproduced in TNBC that also contributes to faster tumor growth.

Wang is working on a team led by Wei Li, director of the University of Tennessee Health Science Center College of Pharmacy’s Drug Discovery Center. She has received $1.7 million to support the research.

Wang and UH professor of pharmacology and toxicology Ruiwen Zhang have discovered a compound that can break down MDM2. In early laboratory models, the compound has shown the ability to shrink tumors.

Wang and Zhang will focus on understanding how the treatment works and monitoring its effectiveness in models that closely mirror human disease.

“We will study how the drug targets MDM2 and evaluate the most promising drug candidates to determine effective dosing, understand how the drug behaves in the body, compare it with existing treatments and assess early safety,” Wang said in a news release.

Li’s team at the University of Tennessee will be working on the chemistry and drug design end of the project.

“This work could lead to an entirely new class of therapies for triple-negative breast cancer,” Li added in the release. “We’re hopeful that by directly removing the MDM2 protein from cancer cells, we can help more patients respond to treatment regardless of their tumor type.”