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

Most AI conversations are loaded with productivity hacks, but it’s also accelerating scientific discovery in ways most people aren’t even thinking about.

In this live conversation from the Microsoft Global Nonprofit Leaders Summit, I’m talking to Clare Durrett from Answer ALS and Terri Thompson from OnPoint Scientific about how they’re helping cut ALS research timelines by 65%! 

With a shared platform called Neuromine, researchers now have access to clinical data, genetics, bio samples, and more, all in one place. Even if you’re not in the research space, this episode is a super powerful example of what becomes possible when you break down silos and build the right partnerships.

Resources & Links

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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Transcript

Cold Open On Connected ALS Data

SPEAKER_03 0:00

The research is really more connected and it's more collaborative. We've taken two completely different platforms of ALS data and we've been able to harmonize those and essentially been able to merge those into one platform. Now it becomes such a deep, deep resource that the next researcher can dive into.

SPEAKER_02 0:19

It's snowballing. More and more people are collaborating. The momentum is there. It's getting bigger.

SPEAKER_01 0:24

Hi everyone. Welcome back to a very special episode of Missions to Movements. You'll notice it looks a little bit different around here today. I am at the Microsoft Global Nonprofit Leaders Summit, and I am joined by some fabulous guests today. So first off, I want to introduce you to Claire Durett, Managing Director at ALS, and Terry Thompson, Program Director at On Point Scientific. So first question as we get started today is I just want the listeners to get to know you a little bit more. So Terry, maybe I'll start with you first. Before we get into the work and the dynamic of this of AI and fundraising and all the amazing work that you do, can you tell us like what does your, if there is the day to day, what does that look like? Or not, if there is no typical day-to-day, and that's fascinating in itself. And then two, what genuinely just lights you up about the work you get to do?

Live From The Nonprofit Summit

SPEAKER_02 1:14

Great questions. I'll tell you that. So for my work with Answer ALS, what really lights me up is really enabling people to get to data, research data, and researchers, making it easy for them to study this data. It's so important to make sure that we're solving a disease such as ALS and getting treatments out. My day-to-day role there is basically removing hurdles and barriers for my team and for researchers to get to make sure that they get to the data that they need.

SPEAKER_01 1:46

Amazing. Claire, how about yourself?

SPEAKER_03 1:48

I'm disappointed. I thought Terry was going to say that I light her up. Well, you too. Her work. But having said that, I got into this about 15 years ago because a friend was diagnosed with ALS. And we wanted to affect change and to make progress. And what lights

What Drives Their ALS Work

SPEAKER_03 2:05

me up is that we are making progress. And we've seen that dramatically increase over the last couple of years. So it's really exciting. We still haven't solved ALS. So that is a little bit troublesome. Work to be done still. Yeah, but it does light us up that we're making progress. And that feels really good. And my day today is very similar to Terry's. You know, if you, if we were people on a racetrack and we were changing tires every day and we didn't know what was going to happen with a race car, that would be our day.

SPEAKER_01 2:31

As someone who's been watching a lot of F1 recently, that that falls right into cue. Amazing. So I want to talk about some specifics into the work that you've been doing recently and it can give us some context when I ask about these two for listeners who might not be as well aware. There's a platform called Neuromine that you've been working in. Before that existed, and maybe you can give us context on what that exactly that is, but what did ALS research look like before?

SPEAKER_02 3:01

Research, and in particular ALS research, was very fragmented. So you'd have a researcher in one area of the world, maybe studying genetics, another lab in another part of the world, studying what we call RNA and another studying protein, let's say. And they're studying these, looking at these molecules in very small cohorts. So they are asking, is the signal that we're seeing, are

Why ALS Research Felt Fragmented

SPEAKER_02 3:27

we seeing a signal, but is it real? And then if they go to meetings and they they go and they compare data, can they compare that data? Because they're completely from different people and smaller cohorts. Now with Neuromine, with a very statistically relevant population of folks, we've got two to three thousand now within our database. And we've got all the omics, we call it omics, the RNA, protein, and so forth, and the genetics. We have all that data and the clinical data all associated together, along with cell lines and biosamples as well. So now researchers can come in. They don't have to generate that data. They can come in right away, ask their questions, and then use our samples for validation. And since they're all working on the same data set, they can easily compare their results to each other. So it's more connective, more relevant, efficient, and faster.

SPEAKER_01 4:24

And I would imagine is this across ALS as a cause, but also is this happening research globally on a multitude of issues?

SPEAKER_02 4:30

Yeah. Yeah. Yeah.

SPEAKER_03 4:32

Yeah. The only thing I want to add to that is, and it's not science specific, but patients have been waiting patiently for decades for research to move faster. It's been just moving at a snail's pace. And when you've been diagnosed with ALS, you're given a two to five year life span after diagnosis and sometimes just after symptoms. So what this does is it really gives us back some time and but the potential for more time for people to live longer. And that's really exciting about the work that we're doing and connecting researchers and moving a lot more faster.

SPEAKER_01 5:04

That's a great perspective on it. That is very true. Because in the moment, I'm sure you're instantly, I want answers now. Whereas the solve now, especially for family members and friends surrounding. Something that we were talking about a little bit earlier before we hit record was there was a keynote this morning that was talking about the history of electricity and the adoption of electricity and how things progressively swung up right after electricity came up and with adoption. With AI, with research like this being more accessible, where do we see cures accelerating at hopefully I know it's still like early days, but has there been discussions in meetings or boardrooms that you're in about having a similar hopeful chart that cures can also happen much quicker?

SPEAKER_03 5:52

Particularly with ALS, we try to stay away from the word cures. What we're seeking are treatments that are effective treatments. There with sporadic ALS, and that's 90% of the cases of ALS, there's no known genetic cause. So we don't know what we're looking for with ALS, and that's why it makes it seemingly impossible to research. But with the work that we're doing at Neuromine and other data resources, we're trying to declassify that so we can understand what type of ALS someone has. So once we're able to do that, we can start effectively

Neuromine And The Power Of Scale

SPEAKER_03 6:21

developing more treatments for that. And Terry can speak to that a lot more scientifically, but that's the direction that we're going. And the acceleration with uh technology and those advancements with AI, we don't know what that number is, but it is advancing very, very quickly. Very quickly.

SPEAKER_01 6:38

Okay. I know there's been a ton, hundreds of active

Treatments, Subtypes, And AI Patterns

SPEAKER_01 6:43

research projects going on with this that have come from that one unified data set. Can you tell, is there been a specific discovery or insight that has come directly from having that scale of data now at our fingertips to these bright individuals that has shifted the field so far in your work?

SPEAKER_02 7:01

So there's not one single breakthrough, but there's an insight. And it's how people are using and how how research is being done now. So previously, as we were talking about earlier, it was fragmented. Now they have an already made data set that's connected to biosamples, cell lines, and clinical data for this large cohort. So the research is really more connected and it's more collaborative. Yeah. And because they are such a large data set, that's when, and I'm sure we're gonna get into it more, but where a lot of AI starts to come in because AI can look at that large, well-curated data set and it can say, are there patterns that are associated with any particular subtype? Now, I you know Claire kind of touched on it, but ALS is a the symptoms are very similar across the folks, but the underlying biological aspects are or could be very different. And so so one person might look more like a circle, one person might look like a square, and another like a triangle. These are subtypes. And the AI can come in looking at that data and really start to pull out that subtypes and relate it to the clinical data that we have.

SPEAKER_03 8:15

Oh, and if I can just add to that, the one thing that has really been powerful is the fact that we've taken two completely different platforms of ALS data, and we've been able to harmonize those and essentially, it's not technically a merge, but we've essentially been able to merge those into one platform so researchers have access to that anywhere in the world. That is an incredible insight that we've been able to accomplish. And other people are trying to do that as well. So it's kudos to Terry and her team for pulling that together. You're very sweet. Thank you. And thank you, Microsoft.

SPEAKER_01 8:47

When when did this all start to happen? How how new is this?

SPEAKER_02 8:51

So on a scale of generating data, it started happening quite a few years ago, but the actual platform that we have right now was launched in 2020.

SPEAKER_01 9:01

Okay.

SPEAKER_02 9:01

Prior to that, it was more academics, academic institutions

Harmonizing Platforms Into One Resource

SPEAKER_02 9:05

trying to get this data out, but they just can't scale and they don't have the security measures like we have now with the platform we built with Microsoft.

SPEAKER_03 9:13

And that yeah, and the idea was forged about 11 years ago. And it was, it was really ALS patients, their families, clinicians, and researchers meeting, and they hatched this plan to create the single largest, most comprehensive ALS resource and share that openly around the world. And so that idea sparked Answer ALS. About six years later, the data started pouring in and they built this platform. So it's only been a few years. That's phenomenal.

SPEAKER_01 9:40

I think a lot of times when we think about general AI and everything with the GPTs, it's we're thinking about the day-to-day, but not the massive scientific discoveries that can happen across the globe. And that's so powerful. And I'm sure also for you working inside the data is like a like, I'm sure there's like lots of aha moments of things coming together or seeing things that before were not able to be seen. That's phenomenal. I want to ask Claire, the partnership with Team Gleason that runs on a parallel track, and so really improving the daily life of people living with ALS. How do you hold both time frames that you've kind of alluded to at once, right? It's serving people right now, but then also building towards the treatments for the future.

SPEAKER_03 10:22

It is a parallel track, and there is equal urgency to both. They're not mutually exclusive, and we try to make sure that we focus on people living with ALS, advancing technologies, improving communication, improving mobility with technology that's advancing right now, but also while we're seeking treatments for the disease. So those work hand in hand with each other. One of the things we're looking at on the Teen Gleason side is partnerships with people having the lived experience of living with ALS, that we can collect data from them day to day using the technology for communication.

Team Gleason And Daily Life Tech

SPEAKER_03 10:54

We're already gathering voice data, we've gathered voice data, others are as well. But looking at how people move, their gait, their heart rate, when they're sleeping at night, we can gather all that information and understand more about their biology, help us understand more about what ALS that particular person has, and then create treatments for them. So living with a disease is just as urgent and what we do with that as it is finding treatments for them. Amazing.

SPEAKER_01 11:20

With the research timelines, I know they've accelerated, I think was it by 65%, which is phenomenal. For a nonprofit looking at you or a research organization that is listening right now, anywhere in the world, that is hearing that number and hearing what you're talking about right now. What had to be true for the infrastructure, the decisions, the partnerships, the culture? This is a very big question. But for that kind of acceleration and for what you're talking about now exists to happen for those that maybe aren't in that spot, but they're like, what in the world like this could be possible for us too? Can you speak to kind of what's made this possible?

SPEAKER_02 12:02

So from my perspective, there are several things you just named. All those things had to happen. We had to have barriers

What Makes Research Move 65% Faster

SPEAKER_02 12:10

broken down. So the barriers for infrastructure, we had to have very large data sets and they had to be well connected and well curated. We had for the infrastructure part partnerships to help build that those platforms. Nonprofits can't do that alone. So Microsoft kindly uh helped us build that platform to help and be very usable for researchers. So those two definitely had to come together. But the really, really neat thing that started happening, and we're seeing it snowball right now, is researchers are getting this data for free. They have to sign a data use agreement, but they get it for free. And they are creating their own data off of the data, data derivatives, we call it. Or they'll use the biosamples from our repositories. And the data that they generate there, they're they're sharing it back to Neuromine. So now you can see we started out with a certain level of genetic data on these participants, and now there's more data being added back. So now it becomes such a deep, deep resource that the next researcher can dive into. It's snowballing, more and more people are collaborating, people are excited, excited to donate their data back. Momentum. The momentum is there, it's getting bigger.

SPEAKER_03 13:30

And the only thing I'll add is that we had to think really differently than what traditional research does. We had to think in terms of what we were mandated to do, and that this needed to be shared freely and openly around the world. That's not done very often in traditional research. So we did not only break down technical barriers, but we had to break down thought barriers and how we can accomplish that.

SPEAKER_01 13:50

For someone who's dealing with that and maybe there is friction, what would be your recommendations? Just keep going.

SPEAKER_03 13:57

Our mission was created by people living with the disease. So we didn't really have a choice to go back and say that that was uh status quo and that we have to keep going that way. It just wasn't working. It was very slow. And so for us to continue that, and we made mistakes and we got a lot of pushback, but we just kept forging ahead. And like you know, Terry said, breaking down barriers, there were plenty.

SPEAKER_02 14:19

Yes.

Breaking Thought Barriers And Persisting

SPEAKER_02 14:20

I think for the folks out there, it is definitely identify what your barriers are. What is what are you trying to get to and what's blocking you? First identify them, and then once you identify them, what would make it easier for you to get to where you want to go? Right. And then you search out that partnership or that help, or you use AI and whatever like we heard this morning. That's right. You use AI and processes that you can then spend more time in other areas. That would be the suggestion. And don't just focus on the big mountain in front of you, right? Chunk it out. Chunk it out.

SPEAKER_01 14:58

Yeah. One of my favorite books at the moment is Dr. Benjamin Hardy, The Science of Scale, and Gaty, I think. And he talks about thinking about the seemingly impossible goal. And if you think about the impossible goal, what's actually going to get you there? Who is going to help get you there? And it's likely not the things that you're focused on right now. If it's been thinking about incremental growth, you're going to have to find new partners, you're going to have to build new technology, you're going to have to think about things in a totally different perspective. And then give yourself a tighter timeline to actually push and focus on that seemingly impossible. And then it's not actually that impossible. Yeah.

SPEAKER_03 15:38

And if it's not working, pivot and find another path for it to work. And we have done that plenty of times. We see where we are today, and we know that everything that we were able to do has been worth it, it has been worth the struggle.

SPEAKER_01 15:51

Yeah.

SPEAKER_03 15:51

It's incredible.

SPEAKER_01 15:52

Claire, question for you. How are you? It's such a fabulous story, and I'm so thankful that the listeners are here to hear from you. How are you getting this out publicly to supporters of the organizations, to patients that you're working with, to the broader scientific community in a way that is really translating the very technical aspect of the work that you're doing into something that's really building trust and support and further momentum for the treatments down the line.

SPEAKER_03 16:21

Yeah, and you're in this. So you understand that communicating difficult subjects are really challenging to the general public. And we do have donors, we have partners, we have tech partners. Terry does a great job communicating to the research community. And when we're communicating to the ALS community or donors or our partners, we have to take this complex information and break it down to where it

Communicating Science With Real Humans

SPEAKER_03 16:42

makes sense to humans. It makes sense to the humans who committed themselves to giving us their body and their time for us to create this massive data set. So we're open, we're transparent with them, we let them know exactly where we are in our progress. We are very open about when we've had struggles and what that looked like. People have been patient with us and they're on the journey with us. Everyone who's been our partner is still our partner today. We're really grateful for that. But just open, transparent, digestible information for real humans.

SPEAKER_01 17:13

Amazing.

SPEAKER_02 17:14

Just to touch on that, I just to remind everybody when we were finishing and really in the heart of generating a lot of this data, COVID hit. So to her point to people donating and patients, it was a very hard time because some of the labs where we were generating this data had to shut down. So we had long lapses of no data generation. And that's why just this last fall we got our last set of data because of that closure. And they have stuck with us and have been patient with us through that whole process. Yeah.

SPEAKER_03 17:48

Yeah. And, you know, sadly, we've lost a lot of people, but we've also gained a lot of trust from their families to continue using their legacy and using their data to help solve the disease. So we're gonna forge ahead.

SPEAKER_01 18:00

Transparency, storytelling, constant communication.

COVID Delays And Trust With Families

SPEAKER_01 18:04

And I think sometimes that's oh, we don't want to share this hard story, but that's exactly what somebody needs here to understand. This is exactly where we're at. Yep. There's no reason. LS is hard enough as it is. Uh we don't need to sugarcoat anything. Yeah. Amazing. Thank you both so much for your work, for sharing your voices and amplifying the incredible research and communication that comes with that and storytelling, and to everyone out there who is just as eager as you to work towards research, finding more solutions. So thank you both. Appreciate your time.

SPEAKER_00 18:35

Thank you so much. Thank you so much for tuning into today's episode of Missions to Movement. If you enjoyed our conversation and found it helpful, I would love for you to take a moment to leave a review wherever you're listening. Your feedback helps us reach more change makers like you and continue bringing impactful stories and strategies to the show. Don't forget to hit that subscribe button too so you'll never miss an episode. And until next time, keep turning your mission into a movement.