Endpoints

Hosted by ALS TDI

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Latest episode

Sep 2025

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EN-US

About the show

The Endpoints Podcast 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) 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.

Listen to episodes

60 recent

October 2, 202619 min

Johnny Rodriguez: Participating in Champion Insights as an Athlete with ALS

Johnny Rodriguez always asked a lot of his body. He played multiple sports in high school and college and then went on to a seven-year career in professional lacrosse—a lifestyle that kept him in elite physical condition. In 2023, at the age of 35, he was working as a high school lacrosse coach, expecting his first child, and still working out every day when he received a shocking diagnosis of ALS. Johnny says he has always wondered whether the toll his participation in elite athletics took on his body influenced his condition. That’s why he jumped at the chance to join the Champion Insights study. Champion Insights, a collaboration between Answer ALS, Augie’s Quest to Cure ALS, and ALS TDI, aims to investigate why certain groups—including elite athletes, first responders, and military personnel—appear to get ALS at higher rates than the general population. Today, on Endpoints, Johnny joins us to share his story, his Champion Insights experience, and why it’s important to him to participate in research. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

September 5, 202536 min

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/ Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

August 14, 202527 min

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 Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

February 20, 202524 min

The Power of Big Data in ALS: Dr. Danielle Boyce

Today on Endpoints, Dr. Danielle Boyce joins us to explore how data science is transforming our understanding of ALS and why the ALS Research Collaborative (ARC) Study presents an exciting opportunity for research. As ALS TDI’s Principal Investigator for Real-World Evidence , Dr. Boyce brings extensive expertise in analyzing big data to uncover key insights about ALS. Her work focuses on harnessing the vast amount of information collected through ALS TDI’s ARC Study, turning data into discoveries that could drive ALS research forward. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

January 16, 202520 min

So Much So Fast: Documenting the Earliest Days of ALS TDI

25 years ago, Steven Ascher and Jeanne Jordan began filming a documentary about a new, one-year-old organization and the family that founded it. That organization was called the ALS Therapy Development Foundation, and its mission was to find treatments for ALS. It was started by Jamie Heywood, whose brother Stephen had been diagnosed with the disease at the age of 29. The film they made, So Much So Fast , came out in 2006. It received critical acclaim and was screened at the Sundance Film Festival. It documents five years in the lives of the Heywood family as they dealt with Stephen’s progressing disease while simultaneously building what would eventually become ALS TDI, the world’s most comprehensive drug discovery lab dedicated solely to ALS. Today, on Endpoints, Steven and Jeanne join us to talk about what it was like during the earliest days of ALS TDI, what it's been like watching the organization evolve, and how their own story helped inspire the film. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

December 13, 202428 min

The ALS Trial Navigator: Dr. Nadia Sethi on Building a Comprehensive Clinical Trial Database

In February 2024, ALS TDI launched the ALS Trial Navigator, a set of online tools designed to help people with ALS find clinical trials. Users can fill out a questionnaire to be matched with trials that meet their criteria, search a global database of studies, and even find sites close to them on an interactive map. Dr. Nadia Sethi, an ALS advocate who became a clinical trial expert after her husband Sundeep was diagnosed with the disease, was instrumental in the conception, design, and rollout of the tool. As we approach one year since the launch of the ALS Trial Navigator, Dr. Sethi joins us to talk about what went into creating this comprehensive database of ALS clinical trials and how her experience helped inspire it. In a first for this show, she also had some questions for the host – Jonathan and Nadia worked together closely during the design of the tool and continue to collaborate to maintain it. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

November 14, 202418 min

Chris Ritter of Oakland United Beerworks: An Ales for ALS™ Story

Chris Ritter, the co-owner of Oakland United Beerworks, never thought he’d make a profession out of brewing. He had always loved beer but was a lawyer by training. Brewing was his son Andrew’s great passion. From a young age, Andrew always knew he wanted to make beer. After college, he got into the industry and eventually became the lead brewer of his own brewery. Everything changed for the Ritter family, however, when Andrew was diagnosed with ALS. When he passed away at the age of just 31, his parents made the difficult decision to keep the brewery going as a tribute to his memory. They have also dedicated themselves to helping end ALS as longtime participants and advocates for the Ales for ALS™ program – which supports research at ALS TDI through craft beer. Today, Chris joins us to share how he’s working to honor his son’s legacy and stay active in the fight against ALS. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

October 30, 202425 min

Biogen's Dr. Stephanie Fradette on the Current State of ALS Research

We need more – likely many more – effective treatments to end ALS. Progress in ALS research has been too slow for too long but, in 2024, we’re witnessing significant advances and a new pace of progress. The past few years have see more treatments for ALS in clinical trials than ever before. Still, most drugs that reach trial fail, in any disease. However, the more experimental treatments that make it to trials – with good preclinical evidence to support them – the more likely there are to be successes. Recently, we have even seen approvals for new ALS treatments, such as tofersen , a genetic treatment developed by Biogen for SOD1-related ALS, sold under the brand name Qalsody. Dr. Stephanie Fradette was one of the people behind milestone. As the VP Head of Neuromuscular Development at Biogen, she oversees the company’s research and development of treatments for ALS and related diseases. Today, on Endpoints, Dr. Fradette joins us to talk about the current state of ALS research - the biggest challenges facing researchers, the developments that give her hope for the future, and how the ALS research community could better serve people with the disease. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

October 16, 202428 min

ALS TDI's Early Years: Founding the First Nonprofit Biotech

In 1999, Stephen Heywood, who was 29 years old at the time, was diagnosed with ALS. His family was devastated when they learned that there were no treatments that could slow or stop his disease. His brother Jamie decided that he had to do something about it, founding the organization that would eventually become ALS TDI – the world’s first nonprofit biotech – in the basement of his parents’ Newton, MA home. The first hire Jamie made as he worked to get this new organization off the ground was Rob Bonazoli. In those days, Rob was responsible for, in his words, “everything non-scientific.” Part of this included building the team that would carry out Jamie’s lofty research goals. Many of the people he helped recruit at that time are still with the organization twenty-five years later. Two of those early employees were Ken Thompson, now ALS TDI’s Vice President of Facility Operations, and Fernando Vieira, our CEO and Chief Scientific Officer. Today, on Endpoints, we’re joined by Rob – as well as Ken and Fernando – to talk about what it’s been like to see ALS TDI grow from its humble beginnings to one of the world’s leading ALS research institutions. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

May 1, 202411 min

Kids Quest to Cure ALS: Getting Young People Involved in the Fight Against ALS

Kids Quest to Cure ALS is an organization for kids, by kids. Their mission is to get young people involved in the fight against ALS. The group was founded by kids in the US and Canada – all of whom have been affected by a loved one’s ALS diagnosis. They are encouraging people under the age of 18 across both countries to band together to help raise funds for ALS research and bring awareness to the disease. Today, on Endpoints, we’re joined by several members of the Kids Quest steering committee to tell us more about the inspiration behind their mission, and why it’s important to involve young people in the fight against ALS. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

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