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.

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&nbsp;and how her experience helped inspire it. In a first for this show, she also had some questions for the host &ndash;&nbsp;Jonathan and Nadia worked together closely during the design of the tool and continue to collaborate to maintain it.

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.

The <a href="https://www.als.net/endpoints/">Endpoints Podcast</a> 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 <a href="https://www.als.net">ALS Therapy Development Institute (ALS TDI)</a>&nbsp;the world's foremost drug discovery lab&nbsp;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.

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, the largest drug discover center focused solely on ALS. Visit our website and register to access all Endpoints Podcast episodes.

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 <a href="https://www.als.net">ALS Therapy Development</a>, the largest drug discover center focused solely on ALS. Visit our website and register to <a href="https://www.als.net/endpoints/">access all Endpoints Podcast episodes.</a>

Endpoints Podcast

The ALS Trial Navigator: Dr. Nadia Sethi on Building a Comprehensive Clinical Trial Database

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.

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.

Chris Ritter of Oakland United Beerworks: An Ales for ALS™ Story

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.

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.

Biogen's Dr. Stephanie Fradette on the Current State of ALS Research

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.

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.

The ALS Trial Navigator: Dr. Nadia Sethi on Building a Comprehensive Clinical Trial Database

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