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- [00:03]
A
At some point, Steve Gleason stopped the talks and said he didn't believe this was making progress and that it would not lead to a forward thinking strategy. So he asked, in a way only Steve can deliver, to think like a beginner and to consider solving the disease as if money wasn't the stopgap. Then he was joined on stage by others living with als, their caregivers and families. They all shared the same line of thinking. And the next day, patients and researchers were all sitting at the same tables. They were discussing and collaborating together. It was really amazing to witness. And at the end of the meeting, a plan was laid out that soon became what is now answer ALS.
- [00:47]
B
This is Dr. Rob Harder with the nonprofit leadership podcast Making youg World Better. What does it take to be an effective nonprofit leader today? What are the biggest challenges? What are the biggest obstacles? How should nonprofits fundraise in an economy that is constantly changing? All of these reasons combined led me to start this show. And it's my hope that through this series, people can learn not only what it takes to be an effective nonprofit organization, but to hear from effective leaders who are successfully making a positive impact in their communities. We hope you enjoy the show as together we hear how they are making their world better.
- [01:22]
C
Welcome to the Nonprofit Leadership Podcast with Rob Harder. I'm Lena Larew, based currently in Mexico, and I'm a listener just like you who cares about the nonprofit world and the people leading it. If you're looking to learn and grow as a nonprofit leader, you're in the right place. Thanks for listening. Now here's Rob.
- [01:46]
B
This podcast is sponsored by Donorbox Donor Box, helping you help others with the best donation forms in the business. Well, welcome back to the Nonprofit Leadership Podcast. So glad you're here today. We've got some really interesting guests today. We've got Claire Durrett and Dr. Terry Thompson. They're both part of Answer ALS. Terry and Claire, thank you so much for being on the show today.
- [02:08]
C
Excited to be here.
- [02:09]
A
Yeah, thank you so much.
- [02:11]
B
You got it. Well, this organization is such a powerful one. It reaches a lot of people. And I always do, though, like to start with giving my listeners an opportunity just to learn a little bit about the guest that are on my show. Maybe what you could talk about is give us a little bit of the background of how did Answer ALS come to life? What was the original idea that set this work in motion? And then how did you both get involved? And perhaps we'll just start with you, Claire, to start that off.
- [02:35]
A
Yeah, I'M happy to. And even after all this time, I find this story fascinating and I'll gladly share it again. I wish I got paid for every time I got to share this story because it's a good one. It was about a little more than a decade ago, Steve Gleason and Team Gleason hosted a two day summit that brought researchers, clinicians, patients, advocates and caregivers together, both in New Orleans and virtually. And I don't have to tell you that in 2013, bringing 1,000 people together virtually was no easy feat. What takes moments today took us days or even longer to coordinate. We thought we had solved the whole world problem when we were able to complicate the call to action. For the meeting was simple and yet incredibly complex. It was to develop a business plan that would help bring an end to ALS in our lifetime. And so on day one, researchers were reporting out on where they were in their own research. Terry knows a lot about this. It was essentially a traditional ALS research meeting. But at some point Steve Gleason stopped the talks and said he didn't believe this was making progress and that it would not lead to a forward thinking strategy. So he asked in a way only Steve can deliver, to think like a beginner and to consider solving the disease as if money wasn't the stopgap in the issues that we all had. So then he was joined on stage by others living with als, their caregivers and families. They all shared the same line of thinking. And the next day, patients and researchers were all sitting at the same tables. They were discussing and collaborating together. It was really amazing to witness. And at the end of the meeting a plan was laid out that soon became what is now Answer als, the entire program. But that was only the beginning. And at the time we couldn't have imagined what is now neuromind. And I'd love it if Terry could take you through a little bit of the evolution of what that program is within. Answer als. Yes.
- [04:38]
C
So I came in a little later. I wish I were at that meeting. Honestly, I hear about it all the time. And what an inspiration operational start to a program. So neuromind was created by. Once we all saw that this Answer ALS data set, which is at the time the largest ALS data set ever assembled, was being built. We recognized that the value of the data depended on researchers being able to easily use it. And many scientific data portals were, and I would say are primarily built for computational experts. We wanted a platform that clinicians, bench scientists, students and computational biologists could all navigate with Ease, you know, so our goal was to broaden access to ALS research by removing technical barriers while maintaining the rigorous scientific standards around generating this type of data. Researchers can go in there and they can discover what we call cohorts, explore the data, they can request access, connect findings to bio samples and cell lines that we have from each participant, all without needing extensive bioinformatics expertise. And that's very important because earlier versions of Neuro MIME were very computational heavy. Just as importantly, neuromind continues to evolve based on the feedback from the research community. So we listen to what researchers want, and when they're asking for something on the platform, you know what would make it easier for you? They tell us. And so we build these tools in by working with the research community to try to help them gain access or process data. And so by making these complex data sets more accessible and continually improving the user experience, we feel like NeuroMind helps the researchers spend less time figuring out how to access data and actually more time generating discoveries that are going to help advance our understanding of als.
- [06:40]
B
Thank you. And I know we're going to keep diving into this. I always think it's powerful when there's this moment where there's an inflection point, right. That really launches a movement. It sounds like there was something like that with Steve Gleason and those who are gathered together. And what I also hear from you is, is that you really took seriously listening to the researchers, and in the process, you learned about some of the things, maybe the shortcomings, if you will, of the ALS research landscape. So what did you see in the ALS research landscape that needed to change? And why did it really require a fundamentally different approach than more of the same at that point? So, Terry, maybe you could pick it up there in terms of how you saw that needing to change.
- [07:21]
C
Yeah, it's an interesting question. And I don't think this only touches for ALS research landscape. I think it's all a lot of disease landscape. But originally when we looked at the landscape, we saw incredible scientists doing important work. But much of the data existed in separate, what we call silos. And I started to think about how to compare this just for your listeners to understand it a bit. But I thought about how cars work. So if you had groups across the world trying to figure out how a car works, even models of cars or what have you, and you have one group studying the wheels and another group is studying the engine, and a third group might be studying drivetrains, they're all looking at different components of and at different cars, each group learns something really cool and valuable, but it's difficult to understand how the entire system works together. And that's where ALS research was for many years. So studies were generating valuable clinical, genomic, and biological data, but they were often collected independently and stored in different formats and difficult to compare across platforms and programs. So researchers spent significant time finding data and negotiating access and trying to connect results from separate studies. We felt that the field needed a different approach, like you were asking. So rather than creating another standalone data set, we wanted to build a platform where diverse types of data could be brought together, standardized to each other, and made accessible to a broader research community. The goal was to help researchers see the complete picture, ask bigger questions, and spend more time on discovery rather than data collection. Integration. And I don't have to say it twice to you guys, but for a disease as complex and urgent as als, we believe collaboration and shared infrastructure will accelerate progress far more. Then continue to work in isolated silos.
- [09:22]
A
Yeah, donating samples, data, and everything that they could to help solve the disease. But they had one non negotiable condition that everything must be widely shared and with little to no barriers. And that philosophy completely shaped the model that we built and that we continue to hold true to today. It's created as powerful transparent loop where patients 100% committed themselves. Researchers can move much faster. There's some debate on how fast they can move, but they do move much faster. And everyone stays connected to the mission. And at the end of the day, it's really about dignity and agency for all those in the ALS community, from researchers to patients. And I just have to add that it goes without saying, ALS takes a lot. It can take everything. But this model gives people who selflessly gave it themselves through the data a perpetual voice and a real role in cracking the ALS code. And that patient first mindset has been baked into every decision since day one. You hear a lot of us chirping in the background every time a decision is being made that we have to maintain the status. And I'm so glad that you asked the question question.
- [10:40]
C
I could throw something else in that I think is really important. And for our program, answer als. The chairman of our board is a person living with als and he's not only our, you know, person living with ALS and chairman of our board, but he's our direct leader and he helps us in so many ways and removes barriers that we've had placed in front of us. He's the man that removes the barriers for us. He is so committed into this program and finding these solutions for treatments for als. And he feels, I think, very good that he's part of it.
- [11:19]
A
Right.
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C
He goes out and he. He does everything he can to help us and push us forward. So that shows you how much we integrate in, you know, our fearless leader, Ed Rap.
- [11:31]
B
Absolutely. No, I love hearing that. And as I think about most of my audience, they're actively involved in the nonprofit sector, the social impact sector. And it takes a lot to sustain and continue any kind of mission or vision. And one of the things you've really taken on that's been really impressive is you have one of the largest disease databases in the world, as I understand it. Talk about how it took the ability to coordinate that, organize that, and keep that going. Talk about what the process was and how you can maybe inspire others who are listening today how to do that on their end. So, Claire, maybe you could start with that one.
- [12:05]
A
Yeah, sure. I'll briefly talk on the administrative side of it and start by saying that it truly came down to being radically committed to our implementation. And also a big part was obviously raising significant, sustained funding, building academic and industry partnerships. We are maintaining transparency and freely accessible data. And we've also stayed relentlessly focused on the patients who literally gave their bodies in time to make it all possible. But sustaining something this ambitious means constantly proving you're good stewards of both the science and the community's vision. Because this isn't a short sprint. People often say it's a marathon, but maybe be an ultramarathon. It's been and is a long term commitment of ours to changing the future of the disease.
- [12:58]
B
Terry, what would you add?
- [12:59]
C
I would add stay present. So now that we've engaged the research community, the ALS community, all the fundraising community, you need to maintain that relationship. And this ecosystem just keeps growing, and we need to stay present within that ecosystem. It's a commitment. It's a big commitment. But once we started the train, we have to stay the course, stay present, and keep pushing it forward.
- [13:26]
B
Well, you've already mentioned neural mind, and for a lot of people, they would say it's described as more than just a database. So maybe talk about that. Explain for my listeners what distinguishes neural mind from how research data has traditionally been collected, shared and used. What makes it a little bit different and unique?
- [13:41]
C
Yeah, I mentioned this briefly earlier, that traditionally the research data has been scattered across institutions, and it's stored in different formats and often difficult to access. Researchers can spend months or even years generating or refining data, negotiating the Access preparing data sets before they can even ask scientific questions. What makes it different is that we focus not only on storing data, but also enabling collaboration and reuse of that data. So NeuroMind brings together the clinical, genomic, transcriptomic, all this biological data, including imaging and access to biosamples for validation. We bring it together in a single environment where researchers can easily again discover and explore and request access to that those resources. But it's more than just a repository. The data that we collect across programs. So we have two programs currently within NeuroMind and they're not from the same population of participants. Right. But we had to take that data and we had to harmonize it and standardize it so researchers can then compare the findings across the studies, identify the cohorts and access the associated biosamples and cell lines and build on work that's already been done. So I kind of touched on it. But we're also working towards this model where researchers contributed their findings, their derivative data sets back to neuromind and that creates a cycle where every project adds value for the next researcher rather than starting from scratch every time. So for a disease like als, where participation and data generation are both incredibly valuable, our goal is to maximize the impact of single sample and every data point. And NeuroMind helps reachers spend less time. Again, I'm kind of repeating myself, but less time finding and preparing data and more time making discoveries and creating this collaborative ecosystem.
- [15:41]
A
We have nearly 600 research projects that were started freely just through the. That's not insignificant. And I think we're at 90 peer review papers that have resulted from people's access to neuromind. And the only thing I'll add to that was we, we hear from researchers using the data how impactful it was to them. And one researcher said, and I'll paraphrase is it really was pretty long, that she actually feels like the data was built to accelerate discovery, not slow it down. And that pretty much sums everything up and why we created this platform and ultimately neuromon.
- [16:17]
B
We'll be right back. Are you looking for an easy and effective way to boost your nonprofits donations? Well, look no further than DonorBox, the online fundraising platform that streamlines your fundraising efforts, maximizes donations and simplifies giving for your supporters. With DonorBox, you can create beautiful donation forms, accept digital wallet payments, track donations and send auto receipts. And the best part, there are no setup or monthly fees and no long term contracts required. So what are you waiting for? Visit donorbox.org today to get started. That is www.donorbox.org. Well, again, I've had some other guests on the show talk about medically focused nonprofit organizations, but there's no doubt that answer ALS really has this research focus to it. And one of the other questions kind of as a follow up, because Terry, you mentioned this a little bit, but tell the audience again, how does integrating clinical, genomic and other multi omic data into a single environment change what researchers really are able to do? And then how quickly can they it because they integrate all those pieces.
- [17:24]
C
One of the biggest challenges in biomedical research is that generating these high quality data sets, it takes years and significant funding and participation from hundreds of people. In the case of answer ALS, you know, Claire, you know, the numbers are, you know, it's been here, we've been here so long it's kind of fuzzy. But it took roughly eight years, eight to nine years to generate the clinical and the genomic and all the biological data now available through NeuroMind. And bringing all these data together in a single environment, we pass those time savings directly to researchers. So instead of spending years building a cohort or generating data, they can start with a scientific question and immediately begin testing the hypothesis. And so that's what NeuroMind enables. Researchers can explore how a genetic variation influences gene expression, how those changes affect proteins and how they relate to clinical outcomes. So kind of going back to the car analogy, they can see a complete car if you're integrating all these different, the wheels, the drivetrain and the engine, researchers together, and they have the metadata we call it, that kind of is the connective tissue for all this all right there at their hands and they can see the whole system at once. And so that I think along with having access to all the patient derived cell lines and biospecimens use for validation, allows researchers to validate findings more quickly. So ultimately, NeuroMind shifts the research process from collecting data first and doing science later to doing science immediately, allowing researchers to spend more time making discoveries and less time building infrastructure.
- [19:05]
B
Well, another part of your core model which I really am impressed with, is you really want to make this data accessible globally. And so the challenge I think is how do you keep it at a low entry level, an easy entry level point for anybody around the globe and to access this data, but at the same time maintaining that rigor and quality and scientific integrity at the highest levels. I think you both want to speak to this, but I think that's a big piece of your model. Claire, maybe you could start and then Terry, you can answer too yeah, I'll
- [19:30]
A
just sort of echo what you just said. And it is a great question because it gets right to the heart of the problem that we had to solve. Terry's spoken about this a little bit, that this is that business plan and this, these were the issues that were present in ALS that we had to work to solve with this platform. It is important to emphasize that the core part of our model is making this data globally accessible. And that's been really profound. As we've seen, as I just mentioned, almost 600 research projects had started from it and it's everywhere. We're in 13 countries around the world and things are just popping up all over the place. So we've been really intentional about lowering the barriers to entry as much as we can. And at the same time, we never wanted to sacrifice, to your point, the rigor, the quality or the integrity. So the system that we built, it's still, it's as open as possible, is freely accessible, and most importantly, it's not complicated for people to use. Terry is a much better at walking everyone through. We actually made that balance work in practice, but it has been a core component of who we are.
- [20:38]
C
I think for me, what I would add is one of the things we learned early in ancillary last while we were building this plan. As Claire was saying, is there is a balance between making data easy to access and being responsible stewards of participant information. These goals are often presented as competing interests, but we don't believe they have to be. So from the beginning, we work closely with our clinical sites, our participants in consenting and an independent central IRB to create a framework that protects participants while enabling broad scientific access. So again, like we're talking about, researchers anywhere in the world can access and discover this data through this standardized process. It's all built around responsible data use and stewardship. At the same time we, Claire mentioned, we worked hard to remove unnecessary barriers by providing clear guidance, a streamlined workflow and support for researchers from a wide range of backgrounds. And this is important, and I mean researchers, wide range backgrounds, I'm talking about, we have high school students that access the data. We have individual investigators that are not attached to any kind of institution. And we worked to get that process in place with our committee, our access committee and our IRB to make sure that we were doing it correctly without jeopardizing our participant identification. So we're also equally important is ensuring that the data are trustworthy, which is why we invest heavily in quality control, harmonization and documentation. So, you know, the Philosophy is kind of simple. You know, make it as easy as possible for qualified researchers to access and use the data while maintaining the governance and scientific rigor, I would say, needed to protect participants and support the meaningful discoveries.
- [22:36]
B
Well, no doubt maintaining that data integrity is so important of building trust, that the data really is something you can trust for anybody who accesses it. And then you've also mentioned, both of you mentioned multiple times you've had to build out a really long term sustainable funding plan. And to me, trust also plays into that. Like you have to build trust with donors, you have to build trust with those you're serving, and yet you're dealing with some really personal data with the clients that you're serving. So maybe you could talk about that. How have you built trust even in the midst of having lots of personal data, you know, kind of at your fingertips? And how has that trust and accelerated the change you've seen? And then again, maybe you could, Claire, start with that and then, Terry, you could speak to it.
- [23:15]
A
Sure. Trust is absolutely foundational. And without none of this, it just. Without trust, none of this works. And we've created trust by acknowledging participants as true partners, not just as, as data sources or resources, because oftentimes people in our participants in the ALS community feel like they've contributed data in one place. Why should they contribute in another? And I think they really trust us because we have shared it in so many different ways and we're openly sharing the data and we've developed that relationship with the community and from day one, the ALS community, because they helped us design this model and they set the rules, we continue to communicate to them that that has been the most powerful for us because they helped design the program. They also made it clear they were willing to share their incredibly personal data, their biology and clinical journey, even their voice, but only if it was handled with that transparency and the respect that Terry mentioned. So we've been honoring that by keeping everything accessible with minimal barriers, while maintaining the highest standards of privacy, security, and scientific quality. But, you know, all that to say we take trust with our patient partners and the researchers we work with to heart. I mean, I can't say it differently. We are fully committed to that through our leadership, all the way down to the high school student who researches on our platform.
- [24:44]
B
Terry, what else would you add?
- [24:46]
C
Well, I would. I mean, Claire pretty much hit it all, especially for the participants. We're in a situation where our participants, if there's any hiccup with any kind of, let's say an external institution is having an issue with taking the data on because of potential identification of a participant. Our participants are saying, give me the phone, I want to call them. I want my data in the hands of researchers. Like they're begging, they're begging institutions to understand the urgency of this. There's a risk to benefit ratio and we've looked at all this and the benefit of way outweighs the risk of identification. All of our data is de identified. So I think for the participants, I think just showing them that we are sharing this data and that there's all these publications coming out of it, I think that gains trust with them that we're doing what we said we'd set out to do. And then for the research community, I think what helps us is no, nothing's perfect. And we had to start building this kind of from the ground and there was nothing really to model it off of that. Well, honestly, in the very beginning. And so we kept taking their feedback. We send out surveys quarterly or maybe even more frequently, like, hey guys, what would you rather see? What do you think is more valuable? What would you like to see for here? This, that they can write me directly and say, hey, the data I took down, I noticed that there was something missing in this one file. We go back, we investigate with the clinic that it came from and we make sure that the data is corrected and everything looks good. So they know that we're on it and we're listening and we're trying to help bring it all together.
- [26:29]
A
So it is this suggested multiple times that we charge for the services that we provide. It's been suggested many times that we sell the data that we have and we've refused to do it every single time because that is not what was intended by the community.
- [26:44]
C
Yeah, this is all completely free. Completely free.
- [26:47]
B
That's amazing, by the way, and I'm glad you emphasized that. I think that's really rare and I love that. Both, number one, it's free and two, that you really protect the data though, and you're not going to sell it. I think that's fantastic. Again, going back to building trust that continues to further that trust. Well, there's no doubt that you've been able to scale this organization and the global research community continues to engage and grow around. Answer, als, what has been most meaningful to each one of you? That was one part of the question. And then secondly, as you think about that, what could you pass on to other nonprofit leaders that are listening, who really would like to scale much like you have done and grow their organization through better collaboration or potentially data research. So, Claire, maybe you could first answer that one and then, Terry, both what's been most meaningful? And what advice would you pass on to other nonprofit leaders?
- [27:31]
A
When I talk about what's most meaningful, I'll most likely cry. So I'm going to try not to. I got into the ALS space of no background. I'm a biology major, but I have no background in ALS whatsoever until my friend was diagnosed, Steve Gleason. And since then I've known over 200 people who have passed away from the disease. And I've been doing this for 16 years. So just knowing that we're plugging away at progress and we're forcing the hand of research to make sure that. That people look at this in a different way and that we continue this fight until we find treatments or ultimately cures for the disease, that's what's most meaningful to me, or otherwise I'd be retired. But I think we'll maintain this fight until we see something happen within the ALS community. And then just the lessons for nonprofit leaders is to remind them of what we've discussed. To build and commit to trust with your community. That's the most powerful part of what we do. And to also empower all of the stakeholders to help design and model and insist on accessibility with the fewest barriers. I know we discussed that several times with what we've done, but I still believe that when you combine the trust and the transparency and even high quality data and information, you create that cycle where people support the program authentically. And I'd have to say that our donors in our ALS community, I think, are very authentically invested in this program emotionally and financially. And in the science, you create a pathway where researchers can move much faster. And we've seen truly how that can accelerate impact.
- [29:15]
C
For me, as long as I've been in research, before my PhD, after my PhD, I've always worked in human disease of some sort of. And by doing that, you want to help, you want to give back, in a sense. But when you see families come into the lab, families that want to come and see where the research is taking place, or they want to meet the researchers and you meet these people one on one. I get the chills just thinking about it because these people are looking to you to try to help solve or find treatments for them or their family members. It's so empowering and it's just humbling at the same time. So that's what brings me here. I want to get this data out I know that we, as a global community, research community, have to work together. And the only way we can do that is by sharing what we have with each other. And that's going to make the difference. Not working in silos. And one of the biggest lessons I feel that we've learned is that technology alone doesn't accelerate science. You have to build going back to this ecosystem, you have to build an ecosystem that researchers can actually use. And that means listening to your community, just like you were saying, Claire, and lowering barriers to access and investing in data quality and governance, creating opportunities for collaboration. Listen, we spent, what, eight to nine years, again, just generating these data sets, and our goal is to pass those time savings directly to the researchers so they can focus on asking and answering scientific questions. I'd also encourage nonprofit leaders to think beyond data sharing. The greatest impact comes from connecting data with the tools, the resources in the community needed to turn information into discoveries. So, again, it goes back to this collaboration thing. When you make collaboration easier than working in isolation, you create environment in my mind, where progress happens much faster.
- [31:18]
B
Well, it's been such an interesting conversation. I have a feeling my listeners may want to connect with you. So how can they do that? What's the best way to learn a little bit more about answer Als and then to connect with each one of you?
- [31:27]
A
Yeah, I mean, the easiest way to get in touch with us is@answerals.org and then you can follow either one of us or answer ALS on LinkedIn message.
- [31:36]
C
If you have any questions for me, you can Message me through LinkedIn or if Claire gets the question to her from the answer ALS LinkedIn, she can forward it to me.
- [31:47]
A
We have a team of about three core people, so the emails usually get transferred pretty easily.
- [31:52]
B
I love it. I love that. Well, again, I could tell for both of you you're very passionate about this. Thanks for sharing a bit about just what brought you into the journey and how, what keeps you going in this journey. And thanks too, for basically kind of giving the lesson to all of us who are listening, the importance of building trust. Right, with your donors, number one, and with your clients, those you're serving. I think you've done a really, really good job. And so for my listeners who are listening into this, I'm going to encourage you to check out answer als. There's going to be more information, of course, as at every episode with the show notes, you can click on that and learn a little bit more about what they're doing, but I think particularly lean into that. Trust is something that is so hard to build in many ways, but it's easy to lose quickly. And that's often the death knell for many nonprofits is when they lose trust, whether that be with their donors or with the people they're serving. So I think Answer ALS has really done a good job. So thank you again, Claire and Terri, for sharing your insights and for being on the show today.
- [32:45]
A
Really enjoyed it.
- [32:46]
B
Absolutely.
- [32:46]
C
You got it.
- [32:48]
B
Hey friends. Well, I wanted you to know that this podcast can be found on itunes, Spotify, Amazon, Google podcasts, and wherever you listen to other podcasts. I also want to encourage you to, like, subscribe and share this podcast with others. This will actually help us get this great content out to more nonprofit leaders just like you. You can also join the nonprofit leadership podcast community, find other resources and interviews of past guests, all on my website, nonprofit leadershippodcast.org well, thanks again for listening, and until next time, keep making your world better. This podcast is sponsored by DonorBox, DonorBox, helping you help others with the best donation forms in the business.