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, …

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 eve…

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 ac…

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 i…

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 availabl…

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 minute…

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 local…

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 goal…

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 Genomics,…

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 …