Building a data warehouse to help find a cure for ALS

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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