Building a data warehouse to help find a cure for ALS

03/18/25 • 46 min

ALS is a fatal motor neuron disease that has no cure and is estimated to affect hundreds of thousands of people worldwide. Why is a cure, or even a meaningful treatment, so elusive? We talk with data engineer, scientist, and rare disease advocate Danielle Boyce at ALS TDI about her work helping us all better understand this terrible illness. While the topic is grim, Danielle provides a lot of hope -- as well as inspiration to all of us to get involved in solving problems through data.

Follow Danielle and her amazing data & statistics tips on LinkedIn: https://www.linkedin.com/in/data-danielle/.

Find out more about ALS Therapy Development Institute (ALS TDI): https://www.als.net/ (and donate if you like!).

Two other resources Danielle mentioned to get involved: https://ohdsi.org/ and https://www.geoals.org/.

Follow Brooke Eby on the various social medias: @limpbroozkit.

Check out my father Robert Rooy's film about our friend John Godinet: https://www.lovingjohnmovie.com/ and watch the trailer here!

Follow me at @jonesrooy and https://www.jonesrooy.com/. Behind the Data is proud to be part of the Daily Tech News Show ecosystem. Special thanks to Tom Merritt and our producer Roger Chang!

Behind the Data is a podcast that uncovers the hidden stories within the data shaping our world. From political polls to global happiness trackers, we dive into the datasets that influence the decisions we make—while showing you why data isn’t just numbers, but a way to understand the world. Whether you're a data newbie or a seasoned pro, each episode makes complex data approachable, revealing surprising insights and the human side of every dataset. Come for the discoveries, stay for the stories.

We are proud to be part of the Daily Tech News Show network of podcasts.

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Follow Danielle and her amazing data & statistics tips on LinkedIn: https://www.linkedin.com/in/data-danielle/.

Find out more about ALS Therapy Development Institute (ALS TDI): https://www.als.net/ (and donate if you like!).

Two other resources Danielle mentioned to get involved: https://ohdsi.org/ and https://www.geoals.org/.

Follow Brooke Eby on the various social medias: @limpbroozkit.

Check out my father Robert Rooy's film about our friend John Godinet: https://www.lovingjohnmovie.com/ and watch the trailer here!

Follow me at @jonesrooy and https://www.jonesrooy.com/. Behind the Data is proud to be part of the Daily Tech News Show ecosystem. Special thanks to Tom Merritt and our producer Roger Chang!

We are proud to be part of the Daily Tech News Show network of podcasts.

Subscribe and leave a review!

Hosted on Acast. See acast.com/privacy for more information.

Previous Episode

Spying on Elon Musk and Tesla from space

Oceans of numbers come pouring out at us each day about the big tech companies -- whether it's spending on AI, iPhone sales, Tesla stocks ... or, lawsuits against SpaceX by Cards Against Humanity? -- senior tech correspondent Rani Molla is on the case. We talk with her about how to make sense of all the numbers coming our way, the power of zooming out and getting the (literal and figurative!) big picture, and why her comparative literature degree has been a surprisingly huge asset in her numbers-centric work. Also, we find out about what the heck Elon is up to (at least with respect to some of his goings-on!).

Rani's articles that use satellite images:

"Before and after: Aerial photos show what being Elon Musk's neighbor can do to your land," Sherwood News

"Tesla's massive pileup: Tesla's unsold inventory is creating stockpiles you can see from space," Sherwood News

Resources mentioned:

Tesla's Form 10-K for 2024

Flourish data visualization platform

Read more of Rani's great work on Sherwood News here and follow her on Bluesky here!

Read more about Andrea here and on Instagram. And check out our partner show, the Daily Tech News Show!

We are proud to be part of the Daily Tech News Show network of podcasts.

Subscribe and leave a review!

Hosted on Acast. See acast.com/privacy for more information.

Next Episode

The power of turning political attitudes into numbers

We take it as a given that Americans are politically polarized, but how do we actually know if empirically this is the case? We talk with Prof. Patrick Egan (NYU) about how we can quantify something as abstract as a political attitude, why doing so helps us understand polarization, and how all of this helps reveal opportunities where we can make progress on areas where we're most divided -- such as climate change.

Explore Pat's research and writing: https://wp.nyu.edu/egan/.

Papers and resources mentioned in the episode:

An example of Pat's work on issue ownership is here.
The data Pat mentioned on Americans' political attitudes since 1948 is from the American National Election Studies (ANES), which you can explore for free here.
An example of measuring leaders' ideologies based on their roll call votes is here.
An example of measuring ideology based on campaign contributions is here.
Learn more about Hanna Pitkin's concept of representation in her 1972 book The Concept of Representation (helpful summary here).
Pat's 2024 climate change paper (with Megan Mullin) is US partisan polarization on climate change: Can stalemate give way to opportunity? (appeared in PS: Political Science and Politics 57(1): pp. 30-35).
BTW: the adage that states that headlines that pose a question tend to have the answer "no" is Betteridge's law of headlines and it's very fun.