PODCAST · science
Endpoints
by ALS TDI
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.
Episodes
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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,...
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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…
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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...
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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...
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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,...
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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...
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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…
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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.…
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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...
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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...
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Many Shades of ALS: Supporting People of Color with ALS
One of the most common misconceptions about ALS is that it only affects older white men. In reality, the disease can affect anyone of any age – and of any ethnicity. Many Shades of ALS, a team within the I AM ALS organization, is working hard to dispel some of these misconceptions. Their mission…
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Roon: A New App for Navigating ALS with Help from Experts
When dealing with a disease like ALS, it can be hard to know where to turn for reliable information and advice. While your doctor and care team might be able to provide some answers to your questions, there are many topics that they might not be equipped to handle. There are many resources...
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Endpoints Shorts: Dr. Nadia Sethi on PTC Therapeutics PTC 857
Welcome to the latest episode of Endpoints Shorts, presented by the ALS Therapy Development Institute. In these bite-size podcasts, we’ll be tackling important scientific concepts for people interested in ALS research, current clinical trials, and news from around the ALS space – all in 15…
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Go On, Be Brave and Hope Fights Back: Andrea Lytle Peet on Her New Film and Book
Andrea Lytle Peet’s passion for running started simply enough. At age 30, she had just moved to Washington, D.C. to be with her husband, David. Stuck in their house during the snowy D.C. winter, she started walking on a treadmill in their basement to keep active. Soon, she had signed up for a…
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Could Accelerometers Provide More Sensitive Measures of ALS than the ALSFRS-r?
Finding more accurate ways to measure ALS progression is one of the most important challenges facing scientists today. More sensitive, objective ways of measuring how the disease is affecting people could help make clinical trials faster and more efficient. Achieving this is one of the primary...
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ALS TDI and Unite Genomics Partner to Bring Electronic Health Record Data into the ARC Study
ALS TDI’s ALS Research Collaborative (ARC) is a global initiative that partners with people with ALS to gather data about the disease to help us better understand the underlying biology of ALS and accelerate the discovery of treatments. Recently, ALS TDI announced a partnership with Unite…
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Endpoints Shorts: Dr. Nadia Sethi on Novartis Pharmaceuticals' BLZ945
Welcome to the latest episode of Endpoints Shorts, presented by the ALS Therapy Development Institute. I’m Jonathan Gang. In these bite-size podcasts, we’ll be tackling important scientific concepts for people interested in ALS research, current clinical trials, and news from around the ALS space...
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Endpoints Shorts: Dr. Nadia Sethi on AL-S Pharma's AP-101
Welcome to the latest episode of Endpoints Shorts, presented by the ALS Therapy Development Institute. In these bite-size podcasts, we’ll be tackling important scientific concepts for people interested in ALS research, current clinical trials, and news from around the ALS space – all in 15…
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Endpoints Shorts: Dr. Nadia Sethi on Annexon's ANX005
Welcome to the latest episode of Endpoints Shorts, presented by the ALS Therapy Development Institute. In these bite-size podcasts, we’ll be tackling important scientific concepts for people interested in ALS research, current clinical trials, and news from around the ALS space – all in 15…
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The ALS Research Collaborative: How Your Participation can Accelerate ALS Research
In March 2023, ALS TDI announced the launch of the ALS Research Collaborative (ARC). ARC’s goal is to learn more about the underlying biology of ALS to help accelerate treatments. The study is powered by the participation of people with ALS, who generously share data about their disease, their...
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Racing for ALS Update: Scott Lloyd on the Past 3 Years of Racing Cars and Raising Funds for Research
Note: Since this recording, David Lloyd passed away in July of 2023. His legacy lives on through Racing for ALS, and in the more than $1 million he helped to raise to support ALS Research. Scott and David Lloyd first joined us on Endpoints in 2020. The two brothers shared their story about how...
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Endpoints Shorts: Dr. Nadia Sethi on MedicNova's Ibudilast Clinical Trial
Welcome to the latest episode of Endpoints Shorts, presented by the ALS Therapy Development Institute. In these bite-size podcasts, we’ll be tackling important scientific concepts for people interested in ALS research, current clinical trials, and news from around the ALS space – all in 15…
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Rinaldo and Sara Dorman: What Keeps Us Coming Back to the Tri-State Trek
For more than 20 years, riders have been coming to the Tri-State Trek for an unforgettable weekend of riding bikes, seeing friends, and supporting ALS Research. The Trek is ALS TDI’s signature fundraiser, and it has raised more than $10 million dollars to support our research to end ALS. It has...
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Jean Swidler: Fighting for the Needs of ALS-Related Gene Carriers
When we talk about ALS, we often make a distinction between types of the disease: 90% of cases appear to be sporadic – meaning there is no family history of the disease. The opposite is true of the other 10% – known as familial ALS or genetic ALS. In these cases, the disease can sometimes be…
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Endpoints Shorts: Dr. Nadia Sethi on AB Science’s Masitinib Clinical Trial
Welcome to the latest episode of Endpoints Shorts, presented by the ALS Therapy Development Institute. In these bite-size podcasts, we’ll be tackling important scientific concepts for people interested in ALS research, current clinical trials, and news from around the ALS space – all in 15…
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Endpoints Shorts: Dr. Nadia Sethi on Cytokinetics’ Terminated Reldesemtiv Clinical Trial
Please note that the study described in the podcast episode, the COURAGE-ALS Phase 3 Study for reldesemtiv, was terminated on March 31st, 2023 for futility – meaning that an unblinded analysis was conducted on data by an independent committee while the trial was still ongoing, and it was...
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Brooke Eby: Spreading ALS Awareness Through TikTok
Normally, you’d expect the subject matter of the videos you see while scrolling through TikTok to be light – funny skits, cute animals, dances, maybe a recipe or two. However, when one of Brooke Eby’s videos comes into your feed, you’ll notice it’s a little different from your average clip. Her...
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Endpoints Shorts: Dr. Nadia Sethi on Biogen's Tofersen Trial for Presymptomatic Carriers
Welcome to the latest episode of Endpoints Shorts. In these bite-size podcasts, we’ll be tackling important scientific concepts for people interested in ALS research, current clinical trials, and news from around the ALS space – all in 15 minutes or less. Our guide throughout this series will be...
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Copper Complexes: Dr. Fernando Vieira on ALS TDI's Promising Potential ALS Treatment
ALS TDI’s primary mission is to discover treatments for everyone with ALS. Every day, our scientists are testing drugs to find the next compound with the potential to make it to clinical trials and beyond. Currently, one of our most promising leads is a group of molecules called copper complexes....
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Endpoints Shorts: Dr. Nadia Sethi on Ionis' FUS ASO Trial
Today we have the first installment of a new series we’re calling Endpoints Shorts. In these bite-size episodes, we’ll be tackling important scientific concepts for people interested in ALS research, current clinical trials, and news from around the ALS space – all in 15 minutes or less. Our…
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Google’s Project Relate: Using Machine Learning to Help People with ALS
Project Relate is an app for Android phones and tablets that aims to use the power of voice recognition technology to help people with dysarthria, or difficulty speaking, in their day-to-day lives. The app is a product of Project Euphonia – a program founded by Google and Harvard researchers in...
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Dr. Silvia Pozzi on the State of Antibody Therapies for ALS
Antibodies are an essential part of our bodies’ defenses against diseases. They are specialized proteins that attack and kill foreign invaders like infectious bacteria and viruses. Antibodies are normally naturally produced by our immune system in response to an infection. However, in recent…
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Ajay Sampat: A Young Neurologist Discusses Life After ALS Diagnosis
ALS can happen to anyone. Although many outside of the ALS community often think of it as a disease that affects older people, onset can occur at any age, in any person, for reasons that are not understood. Take, for example, Ajay Sampat. He’s 36 years old, he has a wife and two young children…
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Prime C: NeuroSense on their ALS Treatment
Celecoxib is a non-steroidal anti-inflammatory drug, or NSAID. Ciprofloxacin is an antibiotic that is used to treat a number of bacterial infections. The former has been trialed unsuccessfully in ALS. However, according to preclinical evidence and a phase 1 trial conducted by Neurosense, a…
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Ric Starry and Kevin Porter: 20 Years of the Tri-State Trek
20 years. More than 5000 miles, give or take. Thousands of riders. Countless hugs, tears, and cheers from the side of the road. And, if everything goes according to plan, $10 million raised for research to end ALS. The Tri-State Trek has built quite a legacy over the past two decades, and there…
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José Fajardo on Participating in a Clinical Trial
There are currently no effective treatments available for ALS. Because of this many people living with ALS turn to Clinical Trials, both to get a chance to receive a potentially beneficial treatment and to help push forward the scientific effort to end the ALS. It’s not an easy commitment...
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Coya Therapeutics: Treg Therapy in ALS
Regulatory T cells, also known as Tregs, are specialized cells that are part of the immune system. As the name implies, they help regulate the body’s immune natural immune response, among other functions According to some studies, the dysregulation of TRegs may play a role in several...
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Sally Stewart of the Denver Wine Merchant: Staying Involved with Her Passion in the Face of ALS
Sally Stewart knows wine. It’s the focus of her career, and her great passion. As a sommelier, she’s worked in great restaurants in places like Portland, Oregon, Telluride, Colorado, and New York City. Her career was in a great place – she had a resumé that included restaurants at a world-famous...
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Project Euphonia: ALS TDI Works with Google to Help People with ALS Communicate
In 2018, ALS TDI began working a big collaboration with a partner you’ve probably heard of – Google. At the time, Google was looking to put their artificial intelligence technology to use to help develop better speech recognition software for people with conditions that affect their ability to...
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Dr. Kyle Denton: Induced Pluripotent Stem Cells in ALS Research
One of our most powerful new tools in recent years for in vitro experiments are something called induced pluripotent stem cells, or iPSCs. iPSCs are created with a technique that allows scientists to take living cells, often skin cells, from an adult human and revert them to the state of a stem...
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Carol Hamilton: How ALS TDI Works to Help Veterans with ALS
Much of what causes the 90% of Amytrophic Lateral Sclerosis (ALS) cases that occur sporadically remains a mystery. However, one risk factor that is supported by a large body of evidence is service in the military. In recent decades, a number of studies have shown that veterans’ have a…
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Tavares Speer: Spreading ALS Awareness on Social Media
When it’s used right, social media can be a powerful tool to spread awareness. Before Tavares Speers was diagnosed with ALS, he already had a big social media following. His tens of thousands of Instagram followers would give him enormous numbers of likes on every picture he posted – images of…
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Steve Cochlan and the ALS Family of Faith
After an ALS diagnosis, it can be hard to know where to turn. There are doctors and clinics that offer medical support, and services organizations that can help with getting equipment and things like securing travel to medical appointments. There are advocacy groups that work to change policies…
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ALS TDI: The Drug Discovery Engine for ALS
Recently, ALS TDI took an opportunity to reintroduce ourselves. If you follow us on social media, read our emails, or check our website you may have noticed that we have a new way of describing our role in the effort to end ALS – that we are the Drug Discovery Engine for ALS. What do we mean by...
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I'm Dying to Tell You: Lorri Carey on Living – and Podcasting – with ALS
If you aren’t already, you should be tuning in to I’m Dying to Tell You. It’s a podcast about inspiration, full of compelling interviews with people who have faced incredible challenges – including many people from the ALS community. However, one of the most incredible things about the show is…
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What is a Biomarker?
Biomarkers are an important part of medical research and drug development. A biomarker is a broad term that describes some sort of measurable property of the body, especially one that can tell us something about a disease. Common examples are glucose levels for type one diabetes and blood…
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MERIDIAN: Apellis Discusses their Phase 2 ALS Trial
The Complement system is an intriguing potential pathway for treating ALS. It’s an essential part of the immune system – and many researchers believe its dysregulation could play a role in some cases of ALS. A class of drugs known as “complement inhibitors” seek to treat ALS by targeting certain...
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Lou Gehrig Day: Celebrating a Legend and Raising ALS Awareness
For years, Lou Gehrig has been recognized as both a face of ALS and a legend of Baseball. But, until now, he did not have an official day dedicated to him by the MLB, unlike some of his fellow legends like Jackie Robinson and Roberto Clemente. That’s where the Haberstrohs come in. Tom, Steve, and...
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Braingate: Helping People with ALS Control Devices with their Minds
Today on Endpoints, we’re joined by Dr. Leigh Hochberg. He's the the Director of the Center for Neurotechnology and Neurorecovery at Mass General Hospital’s Department of Neurology and a neurologist in its Neurocritical Care and Stroke Services, a Professor of Engineering at Brown University, and...
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Lisa Cross Bonahoom: Fighting ALS for Herself and Her Family
Today we’re joined by Lisa Cross Bonahoom. Lisa is a teacher, singer, actor, director, choreographer, and dancer who was diagnosed with ALS about three years ago. She brings us a story of how this disease has changed her life – but also how it’s inspired her to become an activist and fundraiser....
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ABOUT THIS 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.
HOSTED BY
ALS TDI
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Frequently Asked Questions
How many episodes does Endpoints have?
Endpoints currently has 67 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is Endpoints about?
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...
How often does Endpoints release new episodes?
Endpoints has 67 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to Endpoints?
You can listen to Endpoints on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts Endpoints?
Endpoints is created and hosted by ALS TDI.
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