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This episode is presented by Bloomerang, the trusted, all-in-one giving platform that connects your data, streamlines your systems, and helps your mission go further. Learn more here.

How Shared Data and AI Are Transforming ALS Research with Clare Durrett and Terri Thompson

When a friend is diagnosed with ALS, you’re immediately confronted with a brutal reality: the average life expectancy after diagnosis is just two to five years. For Clare Durrett, Managing Director at ALS, that personal experience became the catalyst for over 15 years of work to change that timeline — not just incrementally, but dramatically.

In a recent episode of Missions to Movements, host Dana Snyder sat down with Clare and Terri Thompson, Program Director at On Point Scientific, live from the Microsoft Global Nonprofit Leaders Summit. What emerged was one of the most compelling stories in modern nonprofit science: how breaking down barriers — technical, cultural, and institutional — is fundamentally reshaping the pace of ALS research.

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The Problem With “Business as Usual” in ALS Research

For decades, ALS research was deeply fragmented. A geneticist in one country, an RNA researcher in another, a protein lab somewhere else — each working with small cohorts, asking whether the signals they were seeing were even real. Even when researchers went to conferences to compare notes, the data sets were too different and too small to draw meaningful cross-comparisons.

The result? Progress moved at what Clare calls “a snail’s pace” — unacceptable when the disease you’re fighting gives patients only a few years to live.

That frustration, shared by patients, families, clinicians, and scientists alike, sparked an idea about 11 years ago: what if someone built the single largest, most comprehensive ALS data resource in the world — and shared it openly?

That idea became Answer ALS and the platform known as Neuromine.

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What Neuromine Actually Does (And Why It Changes Everything)

Launched in 2020, Neuromine now houses data from 2,000 to 3,000 ALS participants, combining genetic data, RNA, protein analysis (what researchers call “omics”), clinical data, cell lines, and biosamples — all in one place, all connected.

The shift this creates for researchers is hard to overstate. Instead of spending months or years generating foundational data, a researcher anywhere in the world can now come directly to Neuromine, ask their specific question, and use the biosamples for validation. Because everyone is working from the same curated data set, results are immediately comparable.

“The research is really more connected and it’s more collaborative,” Terri explains. “Now it becomes such a deep, deep resource that the next researcher can dive into.”

And it gets more powerful over time. Researchers who access the data for free (with a signed data use agreement) often generate their own derivative data and share it back — a virtuous cycle Terri describes as snowballing. More researchers, more data, more collaboration, more momentum.

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Where AI Enters the Picture

One of the most significant breakthroughs enabled by this scale of connected data is the application of AI to identify ALS subtypes.

Here’s the challenge: 90% of ALS cases are what’s called “sporadic ALS,” meaning there’s no known genetic cause. Symptoms look broadly similar across patients, but the underlying biology can be vastly different. As Terri puts it, one person’s ALS might look like a circle, another’s like a square, another’s like a triangle.

AI-powered ALS research data can surface those differences in ways that weren’t possible with smaller, fragmented data sets. By scanning a large, well-curated population, AI can begin to identify patterns associated with specific subtypes — and connect those patterns to clinical outcomes. That’s the foundation for developing targeted treatments.

The platform recently accomplished something that had seemed nearly impossible: harmonizing two completely different ALS data platforms into one unified resource. “It’s not technically a merge,” Clare clarifies, “but we’ve essentially been able to merge those into one platform so researchers have access to that anywhere in the world.”

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Two Timelines, Equal Urgency

One of the most thoughtful aspects of Answer ALS’s approach is the recognition that research and quality of life can’t be treated as separate priorities.

Through a partnership with Team Gleason, the organization is simultaneously working on technologies that improve daily life for people living with ALS right now — better communication tools, mobility support, and assistive technologies. But it goes even further than that. The lived experience of ALS patients is itself becoming a data source. Voice data, gait analysis, heart rate, sleep patterns — all of it has the potential to deepen understanding of the disease at an individual level and ultimately inform more personalized treatments.

“Living with a disease is just as urgent and what we do with that as it is finding treatments for them,” Clare says.

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Research Timelines Accelerated by 65%

The numbers back up the ambition. Research timelines have accelerated by approximately 65% — a figure that, a decade ago, would have sounded impossible. So what made it possible? Clare and Terri point to several factors that had to converge:

Large, well-curated, connected data sets were non-negotiable. So were strong institutional partnerships — Neuromine was built with Microsoft, because the security infrastructure and scalability needed were beyond what a nonprofit could build alone. And critically, the team had to challenge a core assumption of traditional research: that data is a competitive asset to be protected rather than a shared resource to be amplified.

“We had to think really differently than what traditional research does,” Clare explains. “We did not only break down technical barriers, but we had to break down thought barriers.”

That didn’t happen without friction. There was pushback. There were mistakes. COVID forced extended shutdowns of data generation labs, creating long gaps in the research timeline — and yet patients and families stayed loyal. Their trust was earned through radical transparency: open communication about progress, honest acknowledgment of struggles, and a consistent commitment to keeping patients at the center of every decision.

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What This Means for Nonprofits Beyond ALS Research

If you lead or work inside a nonprofit or research organization, the story of Answer ALS is not just inspiring — it’s instructive. Terri’s advice for anyone staring down a seemingly insurmountable problem is practical and repeatable: identify your barriers clearly, name what’s blocking you, and then search out the partnership or tool that removes that specific obstacle. Don’t fixate on the mountain. Chunk it out.

Clare adds another layer: when the mission was built by people with lived experience of the disease, there was no option to default to “the way things have always been done.” That mandate to change, born from urgency, became the organization’s greatest driver. If you don’t have that urgency built into your mission, consider finding ways to create it — through tighter timelines, bolder goals, or deeper accountability to the communities you serve.

And when a path isn’t working? Pivot. “If it’s not working, find another path for it to work,” Clare says simply. “We see where we are today, and we know that everything that we were able to do has been worth it.”

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Communicating the Complex

For donors, partners, and the broader ALS community, the science behind AI-powered ALS research data can feel inaccessible. Clare’s philosophy is straightforward: break it down to where it makes sense to humans. Be transparent. Be open about struggles as well as wins. Let people feel like they’re on the journey with you — because they are.

That approach has kept every original partner still at the table today. It carried them through a global pandemic that shut down labs and stalled timelines. And it continues to fuel the momentum that is, slowly and then all at once, turning one of medicine’s most stubborn challenges into a solvable problem.

The cure may not have a name yet. But the data that will help find the treatments? It’s growing, it’s connected, and it’s already changing lives.

Resources & Links

This episode is presented by Bloomerang, the trusted, all-in-one giving platform that connects your data, streamlines your systems, and helps your mission go further. Learn more here.

See how one team surpassed a $1M match and raised $2.25M for their mission with Penny, Bloomerang’s AI-powered fundraising strategist. Learn more at bloomerang.com.

Connect with Clare on LinkedIn and learn more about Answer ALS on their website.

Connect with Terri on LinkedIn and learn more about OnPoint Scientific on their website.

Learn more about Team Gleason, a nonprofit that improves daily life for people living with ALS.

The Science of Scaling by Dr. Benjamin Hardy

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ABOUT THE AUTHOR
Dana Snyder
Dana Snyder is the founder of Positive Equation, creator of the Monthly Giving Builder, a sought-after keynote speaker and workshop facilitator, and the author of The Monthly Giving Mastermind: A Framework to Build, Grow & Sustain Subscriptions for Good. She is also the host of the global nonprofit podcast Missions to Movements, and host of the Monthly Giving Summit, a worldwide event for nonprofit professionals focused on building stronger recurring revenue programs.