The Endpoints Podcast (https://www.als.net/endpoints/) features guests from the ALS community, including people living with ALS, researchers, advocates and fundraisers. Each episode cuts to the chase with short, digestible conversations about the latest research at ALS TDI and the most closely watched ALS clinical trials as well as stories from people living with ALS with their thoughts on research, healthcare and their journey with ALS.
The Endpoints Podcast is hosted by the ALS Therapy Development Institute (ALS TDI) (https://www.als.net) the world's foremost drug discovery lab focused solely on ALS. ALS TDI is a non-profit biotech with one mission. End ALS.
To access all episodes of the Endpoints Podcast, visit als.net/endpoints.
Johnny Rodriguez: Participating in Champion Insights as an Athlete with ALS
Host [Host Name] interviews athlete Johnny Rodriguez about his experience participating in the Champion Insights study to understand ALS in elite athletes.
5 Sept 2025TRANSCRIPT
Your Story, Our Science: Her ALS Story and ALS TDI Bring Together Science and Lived Experience
Nobody knows ALS better than people living with the disease. Therefore, it’s crucial for scientists to utilize the perspectives of people with lived experience in their research.
Earlier this year, ALS TDI joined with Her ALS Story—a group of women diagnosed with ALS before the age of 35—to put on a series of Town Hall webinars that highlighted the importance of this connection. The three-part series featured discussions about ALS risk factors, lesser-known symptoms, and stories of diagnosis. In each session, researchers from ALS TDI’s ALS Research Collaborative, or ARC Study, presented information about our current scientific understanding of each topic, while Her ALS Story members shared their own personal experiences.
Today, on Endpoints, we’ll hear some highlights from each episode of the series. We’ll also be joined by Dr. Danielle Boyce, ALS TDI’s Principal Investigator, Real World Evidence, and Alan Premasiri, our Director of Clinical Operations, to discuss what they learned from the discussions and how conversations like these can help shape the way they approach their research.
If you'd like to learn more about ALS TDI's research and how we are incorporating lived experience to advance research, consider attending the ALS TDI Summit on October 17th, 2025 in Boston, MA or online. Register here: https://fundraise.als.net/alssummit/ (https://fundraise.als.net/alssummit/)
Support the show: https://www.als.net/donate/ (https://www.als.net/donate/)
See omnystudio.com/listener (https://omnystudio.com/listener) for privacy information.
14 Aug 2025TRANSCRIPT
How Brain Computer Interfaces (BCIs) Could Help People with ALS Communicate
Brain-computer interfaces, or BCIs, aim to enable people to control various adaptive devices directly with their thoughts. There are many BCI devices currently in various stages of development, with the potential to help people with ALS and similar conditions across many different activities of daily life.
One particular area in which BCI devices may be able to support people with advanced ALS symptoms is communication. Many people with ALS rely on devices such as smartphones, tablets, and laptops to write or speak. All tools like these, collectively known as augmentative and alternative communication or AAC devices, need some kind of input to work.
This could mean using a keyboard, a touchscreen, or, for people with advanced paralysis, an eye-gaze device. As ALS progresses, however, even eye gaze devices may become difficult for some people to use. BCIs—by allowing people to control AAC devices with their minds—could be a potential solution to this problem.
Today, on Endpoints, we’re joined by two experts to discuss BCI technology and, in particular, its potential to help people with ALS continue to communicate.
The views expressed in this podcast are those of the speakers and do not represent official endorsements by any organization. Kate Nilsen currently serves as an advisor to Synchron, a company developing a brain-computer interface (BCI) device. This device is investigational and is currently in clinical trials approved by the U.S. Food and Drug Administration (FDA). For those interested in staying informed about Synchron’s ongoing work and updates, please join the Synchron community: https://link.edgepilot.com/s/4239f747/ca21cbCpKkOSLI5ZXNqTdQ?u=https://www.synchronbci.com/StayConnected.html (https://link.edgepilot.com/s/4239f747/ca21cbCpKkOSLI5ZXNqTdQ?u=https://www.synchronbci.com/StayConnected.html)
Support the show: https://www.als.net/donate/ (https://www.als.net/donate/)
See omnystudio.com/listener (https://omnystudio.com/listener) for privacy information.
Inside a recent episode
Johnny Rodriguez: Participating in Champion Insights as an Athlete with ALS
Published 2 Oct 2026 · Transcript excerpt
[…] Champion Insights is built on the infrastructure of the ALS Research Collaborative, or ARC, study, the longest-running natural history study in ALS. Since 2014, ARC has been collecting data about people with ALS and asymptomatic gene carriers from around the globe. According to ALSTDI's Director of Clinical Operations, Alan Premissiri, Champion Insights aims to collect much of the same data as ARC, while introducing new elements meant to delve further into the unique backgrounds of these at-risk groups. ALSTDI has been running the ARC study for about 12 years now. The Champion Insights study is built on the same infrastructure that the ARC study is. […]
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