Terri Thompson’s Multidisciplinary Approach
Terri Thompson didn’t set out to work in ALS research.
She had been working on a data-sharing platform for NASA, helping make research from spaceflight experiments easier for scientists to access and use. That experience opened the door to new collaborations, and eventually she was invited to join a group of researchers studying neurological diseases. Their mission was bold but simple: get large-scale data out into the world where others could build on it. “It was just at that time when people were starting to get the idea that you can’t keep your data close to your vest if we’re going to solve these diseases,” Terri says.
Terri eventually found herself working with a group of investigators focused on making data more accessible to the research community. She had already seen how closed-off data systems were slowing progress. “Nobody was sharing data,” she says. “It was so closed. And nobody was making strides.” As she got more involved in this work, she began collaborating with the same investigators who would later go on to help form Answer ALS. The mission (to collect and share data in a way that could drive real breakthroughs) aligned perfectly with what she was already passionate about. “I wanted to help organize data in a way researchers could easily access and actually use. That became my thing.”
Now, as Program Director and Director of Data Management at Answer ALS, Terri leads the development and expansion of the Neuromine Data Portal, the most comprehensive collection of ALS patient-derived biological and clinical data in existence. “We’ve got data from over a thousand participants,” she says. “Whole-genome sequencing, RNA transcriptomics, ATAC-seq, proteomics, clinical assessments, even smartphone-based metrics like motor activity and speech.” The scale is impressive, but so is the simplicity of access.
Researchers can look at all the different layers of data from the same participant. And they don’t have to download everything: they can slice and filter based on what they need.
Her motivation runs deeper than systems or software. “I’ve always been a nerd about diseases,” she says, smiling. “My Ph.D. is in Biological Science with a focus on spinal muscular atrophy. You see how critical it is to work with the families, the people living with the disorder. And for a long time, no one was sharing data. That’s what pulled me in. I wanted to help create a way to organize and share the data so researchers could actually use it.”
ALS, she says, is particularly difficult to untangle. “It’s not a straightforward disease. It’s a spectrum. While about 10% of those diagnosed are genetic, the remainder are sporadic. There are so many different pieces, and that makes it incredibly hard to define clear subtypes. But if we can figure out those subsets, it can completely change how we do clinical trials and treatment development.”
Terri sees that potential coming to life through Neuromine. “We’re starting to see patterns. Some researchers are finding overlaps with other neurological diseases, like Alzheimer’s and Huntington’s. The same molecular pathways are showing up. That’s really exciting.” She adds that the platform gets stronger the more people use it and share their results back. “It just keeps getting richer and deeper.”
One recent example stands out. “A group used biosamples from our participants to investigate neurofilament light chain levels over time,” she explains. “They shared their results back with us, and now that data is available to everyone using the portal. That’s exactly what we want: scientists building on each other’s work to move the whole field forward.”
What means the most to Terri, though, isn’t just the science. It’s the people. “Working alongside people living with ALS has been extraordinary,” she says. “Their courage…oh my gosh. And the community we’re working in is amazing. The researchers, the participants, everyone, it’s collaborative. There’s no ego.
Everyone just wants to help. And that makes it feel like the work is actually doing something. It’s going somewhere.”
That’s the core of what drives her: making sure data tells a story that leads to change. And not in the distant future, but now, for the people living with ALS, for the researchers fighting to understand it, and for everyone working together toward something better.
Join Answer ALS in fueling the breakthroughs still to come. Because the next discovery might just begin with your support.
