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 discoverie...
Feb 20, 2025•25 min
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 Festiv...
Jan 16, 2025•20 min
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 ...
Dec 13, 2024•29 min
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...
Nov 14, 2024•18 min
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 suc...
Oct 30, 2024•25 min
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 Ro...
Oct 16, 2024•29 min
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 t...
May 01, 2024•11 min
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 is to bring attention to people of color living with ALS and the unique challenges they often face – as well as providing resources for their mental, physical, and social well-being. Juan Reyes is a vete...
Feb 12, 2024•21 min
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 available on the internet, but it can be hard to know if you’ve found a reputable source. Roon is an app that help solve this problem. It provides answers to questions about disease, including ALS, in the form...
Oct 31, 2023•25 min
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 minutes or less. Our guide throughout this series will be Dr. Nadia Sethi, ALS TDI’s Director of Community Outreach and Engagement. Today, Nadia joins us to talk about PTC Therapeutics phase 2 trial for PTC 8...
Sep 29, 2023•5 min
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 local 5k. Then she stepped up to a 10 miler. Then came marathons and triathlons. Within three years, she had begun training for a half ironman. Then, at the age of 33, everything changed when she was diagno...
Sep 15, 2023•17 min
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 goals of the ALS Research Collaborative (ARC) – a program at ALS TDI that seeks to learn more about ALS by gathering data about the disease and sharing it with researchers all over the word. One way we do ...
Sep 01, 2023•20 min
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 Genomics, a healthcare data analytics company, that will allow us to integrate a new data source into the program – electronic health records (EHRs). Today, on Endpoints, we’re joined by Unite Genomics CEO Tane...
Aug 18, 2023•22 min
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 – all in 15 minutes or less. Our guide throughout this series will be Dr. Nadia Sethi, ALS TDI’s Director of Community Outreach and Engagement. Today, Nadia joins us to talk about Novartis Pharmaceutic...
Aug 04, 2023•5 min
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 minutes or less. Our guide throughout this series will be Dr. Nadia Sethi, ALS TDI’s Director of Community Outreach and Engagement. Today, Nadia joins us to talk about AL-S Pharma’s phase 2 trial for AP-101. ...
Jul 24, 2023•6 min
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 minutes or less. Our guide throughout this series will be Dr. Nadia Sethi, ALS TDI’s Director of Community Outreach and Engagement. Today, Nadia joins us to talk about Annexon’s phase 2 trial for ANX005. That ...
Jul 06, 2023•6 min
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 genetics, and their progression. This data then informs ALS TDI’s research to find treatments for ALS. It is also shared with the broader ALS research community through the ARC Data Commons, an online port...
Jun 29, 2023•25 min
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 David’s ALS diagnosis inspired them to pursue a lifelong dream – racing high-performance cars. This passion grew into Racing for ALS, an organization that has raised almost $1 million to date through high-...
Jun 09, 2023•20 min
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 minutes or less. Our guide throughout this series will be Dr. Nadia Sethi, ALS TDI’s Director of Community Outreach and Engagement. Today, Nadia joins us to talk about MedicNova’s phase 2/3 trial for Ibudilas...
May 26, 2023•6 min
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 also become something of a family affair, with riders who have been showing up for years, or even decades. Rinaldo and Sara Dorman have been an essential part of the Trek for 11 years. Rinaldo is the capt...
May 15, 2023•16 min
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 traced back in a family for generations. Behind this phenomenon are a number of inherited mutations in genes with names like SOD1, FUS, C9orf72. With the advent of widely available genetic testing, people wi...
Apr 13, 2023•30 min
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 minutes or less. Our guide throughout this series will be Dr. Nadia Sethi, ALS TDI’s Director of Community Outreach and Engagement. Today, Nadia joins us to talk us through AB Science’s phase 3 trial for masi...
Mar 31, 2023•8 min
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 determined that there was no evidence of an effect. Welcome to the latest episode of Endpoints Shorts, presented by the ALS Therapy Development Institute. In these bite-size podcasts, we’ll be tackling importan...
Mar 23, 2023•8 min
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 TikToks may still be funny and full of jokes, but the subject matter – living with ALS as a young woman – is anything but light. Brooke was 28 years old when she experienced her first symptoms – weakness ...
Mar 16, 2023•19 min
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 Dr. Nadia Sethi, ALS TDI’s Director of Community Outreach and Engagement. Today, Nadia joins us to talk us through Biogen’s Tofersen Trial for presymptomatic people with SOD1 gene mutations. Support the...
Mar 10, 2023•15 min
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. These copper complexes, also referred to as redox metabolism modulators, have demonstrated signs of efficacy in ALS TDI’s cellular and animal models of ALS. Currently, our scientists are hard at work lo...
Mar 03, 2023•30 min
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 guide throughout this series will be Dr. Nadia Sethi, ALS TDI’s Director of Community Outreach and Engagement. Today, Nadia joins us to talk us through the Ionis’ Pharmaceuticals Fusion Clinical Trial. Supp...
Feb 28, 2023•15 min
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 collaboration with ALS TDI. Although it’s since expanded to include other conditions that might affect someone’s speech, the project was founded using data collected through ALS TDI’s ALS Research Collabo...
Feb 17, 2023•26 min
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 years, scientists have learned to produce antibodies in a lab to treat a variety of diseases. Several Antibody treatments have been investigated in ALS, including tegoprubart, which was invented by ALS TDI a...
Sep 06, 2022•16 min
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, and works as a neurologist specializing in sleep disorders. Earlier this year, he was diagnosed with ALS. Facing a terrible diagnosis like ALS at such a young age is, of course, unimaginable for anyone wh...
Jul 28, 2022•11 min
