From tech entrepreneur to ALS trailblazer, Venky is turning personal adversity into purposeful innovation, one bold idea at a time.
“It’s not about what I’ve lost. It’s about what I still have.”
That’s how Venky Krishnaswamy described the powerful mindset shift that came after his ALS diagnosis. It’s not just a mantra, it’s the way he lives. And in the short time since his diagnosis in 2024, he’s become an undeniable force in the ALS ecosystem: connector, strategist, learner, and advocate.
Once a high-powered tech executive, Venky now finds himself in unfamiliar terrain: navigating the emotional and physical realities of a rare disease while rallying for smarter, faster, more collaborative research and drug development. His body may be in decline, but his mind is, as he put it: “sharp as ever.”
And he’s using that sharpness to crack open new possibilities for the entire ALS community.
From Diagnosis to Determination
Venky’s journey with ALS began subtly, with weakness in his thumb in late 2023. Within months, that weakness progressed, first to his arm, then his speech and mobility. Like so many diagnosed with ALS, the disease moved swiftly and without mercy. But Venky didn’t retreat. He leaned in.
“Life is not done,” he said. “It’s as rich as it ever was, just with a few constraints we have to work around.”
This deep presence, what he called “the magic of now,” anchors him. It’s not a denial of difficulty, it’s a deliberate choice to live fully, give back meaningfully, and build connections that last.
A New Kind of Advocacy: Tech Meets Humanity
Venky is no stranger to building things from the ground up. As a seasoned entrepreneur and startup mentor, he brings a strategic lens to everything, including ALS.
His unique position, standing at the crossroads of tech innovation and patient advocacy, has made him a sought-after voice in discussions about accelerating drug development. He’s particularly energized by the role AI can play.
“AI has the potential to dramatically improve the economics of therapy development,” he explained. “It can streamline patient recruitment, shorten clinical trials, and even run simulations on digital models of the human body, faster, cheaper, and without waiting on mouse models.”
He’s already putting this vision into practice, mentoring AI-driven pharma startups, experimenting with voice-preserving technology, and even planning to train an AI model using 24/7 recordings of his speech to create a digital tool that can “predict what Venky would say.”
It’s not just tech for tech’s sake, it’s deeply human, designed to restore connection and dignity.
Breaking Silos, Building Bridges
When asked what the ALS ecosystem needs most, Venky is unequivocal: data sharing and open collaboration. He applauded Target ALS’s commitment to open science, describing it as “right on the money.”
“We need to dismantle the silos, between researchers, between institutions, between patients and pharma,” he said. “Without shared data and insight, most research is like throwing darts in the dark.”
And while scientific progress is crucial, Venky also pointed to the business model challenges that slow it down. With high development costs and low profitability compared to other conditions, ALS simply doesn’t attract the same investment.
“That’s why AI matters,” he said. “It’s the only light I see that could truly change the economics and make ALS research viable.”
Championing Global Representation
Venky is also a fierce believer in making ALS research more representative, genetically, geographically, and environmentally.
“If there are genetic or environmental factors at play, we need data from around the world to find them,” he said. “We may be missing important clues by only studying the same populations.”
Redefining What It Means to “Live With ALS”
If you ask Venky what legacy he hopes to leave, he’ll give you two answers:
One is practical: advancing a smarter, more integrated approach to therapy development.
The other is personal.
“I want to show what it looks like to truly live with this condition,” he said. “To live richly, with optimism, and maybe even influence the disease’s progression by the way I live.”
This isn’t about denying ALS’s harsh reality. It’s about choosing agency, community, and possibility in the face of it.
“We didn’t ask to be in this fraternity,” Venky said, quoting a fellow ALS advocate. “But now that we are, it behooves us to lean in, stay strong, and fight the good fight.”
And that’s exactly what he’s doing, with presence, purpose, and a vision big enough to change everything.
Get Involved
At Target ALS, we believe in radical collaboration and the power of ALS community voices like Venky’s. Help us break barriers, accelerate research, and build a future where treatments are not just possible, they’re inevitable.
