Endpoints

ALS TDI
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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. ٢٠ فبراير

    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 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 discoveries that could drive ALS research forward. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

    ٢٥ من الدقائق

  2. ١٦ يناير

    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, 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 Festival. It documents five years in the lives of the Heywood family as they dealt with Stephen’s progressing disease while simultaneously building what would eventually become ALS TDI, the world’s most comprehensive drug discovery lab dedicated solely to ALS. Today, on Endpoints, Steven and Jeanne join us to talk about what it was like during the earliest days of ALS TDI, what it's been like watching the organization evolve, and how their own story helped inspire the film.  Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

    ٢٠ من الدقائق

  3. ١٣‏/١٢‏/٢٠٢٤

    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.

    ٢٩ من الدقائق

  4. ١٤‏/١١‏/٢٠٢٤

    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.

    ١٨ من الدقائق

  5. ٣٠‏/١٠‏/٢٠٢٤

    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.

    ٢٥ من الدقائق

  6. ١٦‏/١٠‏/٢٠٢٤

    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.

    ٢٩ من الدقائق

  7. ٠١‏/٠٥‏/٢٠٢٤

    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.

    ١١ من الدقائق

  8. ١٢‏/٠٢‏/٢٠٢٤

    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.

    ٢١ من الدقائق
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حول

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.

المعلومات

  • صناع العمل
    ALS TDI
  • سنوات النشاط
    ٢٠١٩ - ٢٠٢٥
  • الحلقات
    ٦٥
  • التقييم
    ملائم
  • حقوق النشر
    © 2025 ALS Therapy Development Institute
  • موقع البرنامج على الويب
    Endpoints

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