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…
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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…
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…
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…
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…
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…
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…
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…
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’…
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…
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…
