Endpoints

ALS TDI
Endpoints

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.

  1. 13/12/2024

    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.

    29min

  2. 14/11/2024

    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.

    18min

  3. 30/10/2024

    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.

    25min

  4. 16/10/2024

    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.

    29min

  5. 01/05/2024

    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.

    11min

  6. 12/02/2024

    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 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 veteran living with ALS, an advocate, and co-chair of Many Shades of ALS team. Lakeia Nard is a member of the team who lost her son, King’nazir, to a rare form of pediatric ALS and also runs her own nonprofit, Melanin Children Matter. Today, on Endpoints, they join us to talk about how the team came together, its mission, and how the ALS research and medical communities could be better serving people of color with the disease. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

    21min

  7. 31/10/2023

    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 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 of short video clips featuring researchers, doctors, caregivers, people with the disease, and more. They provide information about topics like treatments, current research into the causes of the disease, and advice about to day-to-day life. Today, on Endpoints, we’re joined by Roon’s co-founder and CEO Vikram Bhaskaran to tell us more about the app, and how his own personal experience with ALS helped inspire it. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

    25min

  8. 29/09/2023

    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 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 857. There are currently no treatments to stop or reverse ALS but the ALS Therapy Development Institute is working to change that. To learn more about ALS TDI and our research to end ALS, visit ALS.net Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

    5min
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Sobre

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.

Informações

  • Criado por
    ALS TDI
  • Anos de atividade
    2019 - 2024
  • Episódios
    63
  • Classificação
    Livre
  • Copyright
    © 2025 ALS Therapy Development Institute
  • Site do podcast
    Endpoints

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