Podcasts about als tdi

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.

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.

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.

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.

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.

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.netSupport the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

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 goals of the ALS Research Collaborative (ARC) – a program at ALS TDI that seeks to learn more about ALS by gathering data about the disease and sharing it with researchers all over the word. One way we do this is to collect movement data by sending people with ALS wearable accelerometers – devices that track movement much like a smart watch. By wearing these devices on each wrist and ankle, participants can generate data about how their disease is affecting their movement over time. Recently, researchers from Massachusetts General Hospital partnered with ALS TDI scientists to analyze these data and demonstrate that these devices can be used as a reliable measure of ALS progression. A paper detailing their findings titled, At-Home Wearables and Machine Learning Sensitively Capture Disease Progression in Amyotrophic Lateral Sclerosis, was published in the journal Nature. To tell us more about this research project and what it means for people with ALS, we're joined by Dr. Anoopum Gupta, a Neurologist at MGH and the paper's lead author.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

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, a healthcare data analytics company, that will allow us to integrate a new data source into the program – electronic health records (EHRs).   Today, on Endpoints, we're joined by Unite Genomics CEO Taner Dagdelen, to tell us more about what this collaboration entails, what researchers can learn from EHR data, and what this means for present and future ARC participants. Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

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 ­– 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 Novartis Pharmaceuticals' phase 2 trial for BLZ945.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

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 AL-S Pharma's phase 2 trial for AP-101. That 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.

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 Annexon's phase 2 trial for ANX005.  That there are currently no treatments to stop or reverse ALS but the ALS Therapy Development Institute I is working to change that. To learn more about ALS TDI and our research to end ALS, visit http://www.als.netSupport the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

In March 2023, ALS TDI announced the launch of the ALS Research Collaborative (ARC). ARC's goal is to learn more about the underlying biology of ALS to help accelerate treatments. The study is powered by the participation of people with ALS, who generously share data about their disease, their genetics, and their progression. This data then informs ALS TDI's research to find treatments for ALS. It is also shared with the broader ALS research community through the ARC Data Commons, an online portal allowing researchers to access years of data dating back to when the program was founded as the Precision Medicine Program, in 2014. This program is powered by participants – people with ALS all over the world who have chosen to share their data with ALS TDI in order to help accelerate research. ALS TDI works hard to make sure that participation is as easy as possible for these volunteers – nearly every aspect of the program can be completed from participants' homes. Today, on Endpoints, we're joined by Alan Premasiri, ALS TDI's Manager of Clinical Operations, to talk about what it's like to participate in ARC, how ALS TDI works to support our participants, and how their invaluable contributions help move our science forward. To learn more about ARC and sign up to join the program, visit ALS.net/ARCSupport the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

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 MedicNova's phase 2/3 trial for Ibudilast.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

For more than 20 years, riders have been coming to the Tri-State Trek for an unforgettable weekend of riding bikes, seeing friends, and supporting ALS Research. The Trek is ALS TDI's signature fundraiser, and it has raised more than $10 million dollars to support our research to end ALS. It has also become something of a family affair, with riders who have been showing up for years, or even decades. Rinaldo and Sara Dorman have been an essential part of the Trek for 11 years. Rinaldo is the captain of Team America, one of the Trek's biggest and most dedicated teams. His wife Sara is a longtime volunteer who serves as the leader of the lunch crew – a job that requires feeding hundreds of hungry, sweaty cyclists every day. Rinaldo and Sara joined us to discuss how they got involved with the Trek, why they keep coming back year after year, and why they're especially excited for this year's ride on June 24-25th.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

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 us through AB Science's phase 3 trial for masitinib.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

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 us through Cytokinetics' phase 3 trial for reldesemtiv.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

Welcome to the latest episode of Endpoints Shorts. 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 us through Biogen's Tofersen Trial for presymptomatic people with SOD1 gene mutations.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

ALS TDI's primary mission is to discover treatments for everyone with ALS. Every day, our scientists are testing drugs to find the next compound with the potential to make it to clinical trials and beyond. Currently, one of our most promising leads is a group of molecules called copper complexes. These copper complexes, also referred to as redox metabolism modulators, have demonstrated signs of efficacy in ALS TDI's cellular and animal models of ALS. Currently, our scientists are hard at work looking for a lead molecule to advance toward clinical trials. Today, on Endpoints, we're joined by Dr. Fernando Vieira, ALS TDI's CEO and CSO, to tell us more about what copper complexes are, how ALS TDI discovered their potential for treating ALS, and where they are in the drug development process.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

Today we have the first installment of a new series we're calling Endpoints Shorts. In these bite-size episodes, 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 us through the Ionis' Pharmaceuticals Fusion Clinical Trial.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

Project Relate is an app for Android phones and tablets that aims to use the power of voice recognition technology to help people with dysarthria, or difficulty speaking, in their day-to-day lives. The app is a product of Project Euphonia – a program founded by Google and Harvard researchers in collaboration with ALS TDI. Although it's since expanded to include other conditions that might affect someone's speech, the project was founded using data collected through ALS TDI's Precision Medicine Program (PMP). Today, on Endpoints, we're joined by Pan-Pan Jiang, a Technical Project Manager for Project Relate, to tell us more about how the app works, how it can help people with ALS, and how ALS TDI's PMP data was instrumental in its development.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

Here I am on location in Boston to bring you a behind the scenes look and my  weekend experience with the ALS Therapy Development Institute (ALS TDI) the world's foremost ALS drug discovery lab focused solely on ALS.  I was so grateful to tour the lab and attend the ALS TDI Summit which was a day of updates on the progress of ALS Research.  I wrapped up the weekend by attending their White Coat Affair gala which is a powerful evening that brings together and honors those living with ALS and remembers those whom we've lost.I catch up with 5 inspirational guests as we chat about the love, passion and hope behind the lab doors of this ALS research lab.  My conversations start directly in the lab as I talk to three scientists, Valerie Tassinari, Associate Scientist III, Anna, Gill, Associate Scientist III, Program Manager and Kyle Denton, Ph.D., Director, Cell Biology to find out what it means to work every day to discover treatments for those living with ALS.Then I talk to Kevin and Tessa Geraghty, who are living with ALS and also attending the ALS TDI weekend events and ask them what it means to visit the lab and meet others fighting the same terminal illness.Finally I chat with Carol Hamilton, Vice President of Development about unique ways to support their ALS research.  I loved witnessing the special bond between those who work in the lab and those who they are trying to save.  From all of us living with ALS, thank you for listening and sharing with a friend.  Hugs, Lorri

Hear my conversation with Lori Larson Heller as we talk about love, loss and moving forward instead of moving on.   Lori is a writer, speaker, fierce ALS advocate, and a widow.   She was in a season where life was going better than she could of planned.  Lori had a husband who was her best friend and soul mate, the absolute love of her life.  Then without warning, her plan changed.   On September 6, 2018 …  her husband Jim Heller was diagnosed with a terminal illness, ALS.  She left her successful commercial real estate investment career and became a full-time caregiver that day.   After losing her husband Jim to ALS, everything Lori was planning for her future vanished before her eyes, which is when she realized that we are not always in control.  Eventually Lori realized she had to make a choice.  Either stay stuck in a mindset of “why me”, or dig deep to see if she had the strength to shift her perspective for what the universe had in store.   We chat about "the old Lori" and "the new Lori."    She shares the superpower we all have: the ability to flip our script and view life through a different lens.   Lori shares that life doesn't happen to us, it happens for us.  You'll hear how she's found acceptance of adversities, and discovered blessings in all the tough stuff.   I love how faithful she is and encourages others that we're all here for a reason, and we have to find our purpose.  Be blessed, listen in and share with a friend.  Hugs, Lorri

Antibodies are an essential part of our bodies' defenses against diseases. They are specialized proteins that attack and kill foreign invaders like infectious bacteria and viruses. Antibodies are normally naturally produced by our immune system in response to an infection. However, in recent years, scientists have learned to produce antibodies in a lab to treat a variety of diseases.  Several Antibody treatments have been investigated in ALS, including tegoprubart, which was invented by ALS TDI and recently successfully completed a phase 2a clinical trial. Dr. Silvia Pozzi is Assistant Professor at the Université Laval's Brain Research Center in Quebec City specializing in ALS Research. She recently was an author on a paper reviewing the current state of antibody therapies for ALS.  She joined us on Endpoints to discuss the current outlook for these therapies in the ALS space – as well as what the future might hold for these treatments.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

Sally Stewart knows wine. It's the focus of her career, and her great passion. As a sommelier, she's worked in great restaurants in places like Portland, Oregon, Telluride, Colorado, and New York City. Her career was in a great place – she had a resumé that included restaurants at a world-famous ski resort, a restaurant with a Michelin star, and even one founded by food legend Wolfgang Puck. That all changed when, at the age of 31, she was diagnosed with ALS. However, Sally found a way to adapt – and, even when she couldn't work in restaurants anymore because of her progression, to stay involved with her passion. Today, she's the co-owner of the Denver Wine Merchant, a store in Colorado that sells fine wines, beers, and liquor, hand-picked by Sally and her Co-owner/partner Stephen. This year, they also had a particularly special product on the shelves – an ALES for ALS beer from Nederland, Colorado's Knotted Root brewing company, whose help sales support the critical research at ALS TDI. Today, Sally joins us on Endpoints to talk about her story, making an ALS-inspired career pivot, and how she's working to support others dealing with the disease. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

In 2018, ALS TDI began working a big collaboration with a partner you've probably heard of – Google. At the time, Google was looking to put their artificial intelligence technology to use to help develop better speech recognition software for people with conditions that affect their ability to talk. ALS TDI was the perfect partner to launch this effort with, having already collected a wealth of voice recordings as part of our Precision Medicine Program. Thus, Project Euphonia was born. Utilizing our PMP data, Google researchers began working to train their AI speech recognition tools to better understand people with ALS-affected speech, as well as other conditions. Today, this collaboration is beginning to bear fruit, with the early testing of Project Relate, the first app made available to the public from Project Euphonia. Today, on Endpoints, we're joined by Google's Julie Cattiau, a product manager for Project Euphonia, to tell us about the history of this collaboration, what people can expect from the new app, and what might be coming in the future Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

One of our most powerful new tools in recent years for in vitro experiments are something called induced pluripotent stem cells, or iPSCs. iPSCs are created with a technique that allows scientists to take living cells, often skin cells, from an adult human and revert them to the state of a stem cell, which can then be grown into any kind other kind of cell in the body – including cells affected by ALS like motor neurons. To further explain what an iPSC is and how we use them in our research to end ALS, we're joined today by Dr. Kyle Denton, ALS TDI's director of Cell biology. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

Much of what causes the 90% of Amytrophic Lateral Sclerosis (ALS) cases that occur sporadically remains a mystery. However, one risk factor that is supported by a large body of evidence is service in the military. In recent decades, a number of studies have shown that veterans' have a significantly higher change of being diagnosed with ALS than the general population. Studies have found that 1 in 6 people living with ALS have served in the military in some capacity, and veterans have a roughly 50 percent higher risk of dying from ALS than the general population. Exploring this connection is an important part of our work at ALS TDI – and it has led to many important steps in both our own science and the wider ALS research community. To explain more about what we know about the connection between the military and ALS, as well as ALS TDI's history working with veterans to advance the cause of ALS research, we're joined by ALS TDI's Senior Director of Development, Carol Hamilton.  Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

When it's used right, social media can be a powerful tool to spread awareness. Before Tavares Speers was diagnosed with ALS, he already had a big social media following. His tens of thousands of Instagram followers would give him enormous numbers of likes on every picture he posted – images of him out partying with friends, hanging at the beach, or out to dinner with his then-partner, now husband Erik. Today – more than a year after his diagnosis – Tavares' feed looks a little different. Mixed in with the pictures of the “self-described” “happy-go-lucky guy” having a good time, there's a lot of content promoting ALS awareness, including telling his followers about ALS TDI's Precision Medicine Program (PMP). Today, Tavares joins us to talk about his story, and how he puts his status as an influencer to work for a great cause – supporting ALS TDI's research to find treatments for everyone living with ALS. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

After an ALS diagnosis, it can be hard to know where to turn. There are doctors and clinics that offer medical support, and services organizations that can help with getting equipment and things like securing travel to medical appointments. There are advocacy groups that work to change policies to help people with ALS, and research organizations like ALS TDI that are leading the way in finding treatments to end the disease However, Steve Cochlan recognized a gap in what was out there after he was diagnosed with ALS in 2019. As a deeply religious man, he felt that he needed spiritual sport to face what lay ahead of him – and when he couldn't find an established group that could provide it, he started one himself. Thus, the ALS Family of Faith was born. The group connects people – both religious and non-religious – with trained chaplains who can provide them with spiritual and emotional support as they navigate the challenges of living with ALS. Steve joins us today on Endpoints to discuss his story and the mission of the ALS Family of Faith. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

Recently, ALS TDI took an opportunity to reintroduce ourselves. If you follow us on social media, read our emails, or check our website you may have noticed that we have a new way of describing our role in the effort to end ALS – that we are the Drug Discovery Engine for ALS. What do we mean by drug discovery engine? It means that our mission is to discover and invent new ALS treatments, and work to advance those treatments into human trials – and to do it over and over again until there are treatments for everyone living with ALS. Recently, our CEO and Chief Scientific Officer Fernando Vieira gave a presentation at one of our ALS TDI Town Halls to explain more about what we're doing to fulfill this mission, and what it means to be the Drug Discovery Engine for ALS. Today, on endpoints, we're featuring that presentation for anyone who wasn't able to attend or wants to learn more about ALS TDI and our research to end ALS. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

In this episode,  I catch up with Mike and Cheryl Smith who created Ales for ALS, a program that has raised over $3,500,000 for ALS research at the ALS Therapy Development Institute (ALS TDI).   Mike and Cheryl own Loftus Ranches, a fourth-generation hop farm in Washington's Yakima Valley.  Cheryl has lost 9 relatives to ALS, including her grandfather and father.  Along the way, they've learned that her family carries a gene that causes ALS and they have dedicated themselves to fighting the disease through their Ales for ALS program.   Each year the Smiths work with hop supplier Yakima Chief Hops to donate a unique hop blend to participating brewers.   Local brewers can brew whatever style of beer they want.  Ales for ALS brewers are asked to donate $1 to ALS TDI for each pint of the resulting Ales for ALS brew sold. The funds raised go directly to ALS TDI's research lab, where their research team works to discover and develop potential treatments for amyotrophic lateral sclerosis (ALS).    Ales for ALS goes full-circle, from the Smiths' hop fields to craft beer lovers' glasses across the country.  Their commitment and generosity inspire me.  Thanks for listening.  Follow:  https://bit.ly/ImDyingToTellYouInstagram and https://bit.ly/ImDyingToTellYouTwitterIf it's in your heart to rate and review this episode, please do.  It really helps new listeners find this special community.  Thank you.

Biomarkers are an important part of medical research and drug development. A biomarker is a broad term that describes some sort of measurable property of the body, especially one that can tell us something about a disease. Common examples are glucose levels for type one diabetes and blood pressure for hypertension. Today on Endpoints, ALS TDI's former CEO Dr. Steve Perrin joins us to talk about what a biomarker is and how they're used in drug research. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

This podcast features Jessica Eastland as she gets REAL with us on the struggles illustrated by her father's fight with ALS and also the grace with which her family moves through challenges when life throws hard things at you. Jessica is an educator and a positive community builder committed to raising awareness and support for non-profits working to end ALS (ALS Association, ALS TDI, I Am ALS). Jessica Eastland: Jessica is an elementary school teacher with a passion for social emotional well-being. She lives in the Bay Area with her husband, where they were both born and raised. They live very near to most of their extended family, and she loves every second of it! A woman of many hobbies, Jessica enjoys any opportunity to be creative and to get outside in nature. She is currently working her way through the 2021 52 Week Hike Challenge! Though life can throw many hard curve balls, she doesn't let the beautiful moments and lessons go unnoticed. Support this podcast

Joe Lynch hosts a podcast called “The Logistics of Logistics.” Normally this show covers topics about the logistics and supply chain industries. But recently Joe decided to switch up the format for one special episode after his friend Larry Cepuran was diagnosed with ALS. Joe and Larry talked about the story of their friendship, Larry’s diagnosis, and how he’s adjusted to life with the disease. They also touch on why they’ve decided to encourage their listeners to support our research at ALS TDI. Today, we’re presenting their conversation in full as a special guest episode. Find out more about Joe's podcast at https://www.thelogisticsoflogistics.com/ Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

AT-1501 is an ALS treatment invented by ALS TDI. In 2018, became the first drug invented by a non-profit biotech to be tested in humans. In November of 2019, it successfully completed a Phase 1 clinical trial, and a Phase 2 trial is upcoming. Today, in part one of a new series about the science behind AT-1501, we’re joined by ALS TDI CEO Dr. Steve Perrin, who will walk us through the first steps in the process that lead to the invention of this drug – the research into the mechanisms of how ALS effects the body, the experiments conducted in the lab, and the identification of a target to treat with a new drug. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

When Corey Reich was diagnosed with ALS in 2007, at the age of 21, his family – his sister Clare, and their parents Ted and Wendy – knew they would do whatever they could to support him. Soon after, they discovered ALS TDI and decided that they would dedicated themselves to helping to further our mission to find effective treatments for the disease – as fundraisers, spokespeople, and even as employees. Today, we’re joined by the Reichs, who share their story of working to end ALS – together as a family. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privacy information.

 In this episode of the Endpoints Podcast, Dr. Theo Hatzipetros, the Director of Pharmacology at the ALS Therapy Development Institute (ALS TDI) joins us to discuss CMAP and the role it now plays at the lab. CMAP, which stands for Compound Muscle Action Potentials, is a technique used by neurologists to diagnose neuromuscular diseases and monitor disease progression. In mouse models of ALS used at the ALS TDI lab, CMAP can be used to detect and track disease progression before signs would be noticeable by Neuroscore, the traditional way of monitoring disease progression that relies on the human eye to detect it. Detecting signs of ALS earlier allows researchers to determine the efficacy of potential drugs quicker and ensures that the best drug candidates are advanced to the next stage for further testing. Support the show.

In this episode of the Endpoints, Collin Hadley joins Gabrielle Bellitti, Outreach and Engagement Specialist at ALS TDI, to talk about living with ALS and using mechanical ventilation. Collin discusses how he made the decision to use mechanical ventilation, what considerations went into his decision, and what advice he has for other people with ALS who may be considering mechanical ventilation. To access all episodes of the Endpoints Podcast, visit als.net/endpoints. Support the show.

In this episode of the Endpoints, Tamara Hilliard, from Fort Worth, Texas, talks about the challenges of caring for her husband, Jim, who’s living with ALS,  and his anticipated needs ahead of time. Tamara also shares her story about the pitfalls of traveling and the preparation required to succeed. Tamara and Jim have a great attitude relying on their circle of support and the great resources the community provides. You can access all previous episodes of the Endpoints Podcast, by visiting www.als.net/endpoints. Support the show.

On this episode of the Endpoints, Dr. Steve Perrin, CEO at ALS TDI answers questions about one of the most talked about clinical trials in ALS at the moment, Brainstorm Cell Therapeutics’ NurOwn, a proposed stem-cell-based treatment. The therapy focuses on the cellular support system around a person with ALS’ motor neurons. It aims to slow disease progression by replacing the damaged system with an enhanced one. To listen to more episodes of the Endpoints Podcast, click here. Support the show.

In this episode of the Endpoints Podcast, Dileep Dadlani, Development Director at ALS TDI is joined by Samantha Van Saun who is a Champion in ALS TDI’s ALS Community in Richmond, VA. Samantha has lost her father, uncle and sister to an aggressive form of ALS but is determined to fight back by raising awareness and funds for ALS research. Listen in to find out more about her families journey with ALS. To access all episodes of the Endpoints Podcast, click here. Support the show.

In this episode of the Endpoints, Jeff Roosa, Lee, MA Chief of Police, joins Gabrielle Bellitti, Outreach and Engagement Specialist at ALS TDI, to talk about living with ALS and uniting first responders to raise money for ALS research through Arrest & Extinguish ALS.  You can access all episodes of the Endpoints Podcast for free by visiting www.als.net/endpoints and registering. Support the show.

KCBS Radio afternoon anchor and A2A founder Jeff Bell spotlights ALS advocate Osiel Mendoza. Osiel was diagnosed with ALS in 2016 when he was 21 years old, just three days after proposing to his longtime girlfriend Bella. Since his diagnosis Osiel has graduated college, married Bella and become an ambassador for ALS TDI, a non-profit biotech lab focused exclusively on ALS research.

KCBS Radio afternoon anchor and A2A founder Jeff Bell spotlights ALS advocate Osiel Mendoza. Osiel was diagnosed with ALS in 2016 when he was 21 years old, just three days after proposing to his longtime girlfriend Bella. Since his diagnosis Osiel has graduated college, married Bella and become an ambassador for ALS TDI, a non-profit biotech lab focused exclusively on ALS research.

For years, Dr. Richard Bedlack has hunted for a cure for ALS, a fatal degenerative disease.  And then one day he builds a website called ALS Untangled. That's when strange things start to happen. Reported by Peter Andrey Smith and Reply All producer Sruthi Pinnamaneni. Further Reading The ALS Untangled website Dr. Richard Bedlack’s ALS Reversals website The PatientsLikeMe website The ALS TDI website Nelda Buss wrote a book, You Can Walk, about her experience, and she originally appeared on Fox in 1992 Eric Valor’s website Angelina Fanous’s reporting on VICE and The New York Times Peter Andrey Smith’s website

Guest line up Emily T Gail Show: Ellie Sumic, Bikeworks Beach & Sport talks about growing in North Kohala, seeing her first Ironman as a teenager in 1981. Now Ellie, who has completed an Ironman and two Na Wahine Outrigger Canoe races enjoys being able to give back while also competing. ( (1981 was the first year Herb and I came from Detroit to participate. If I remember correctly 300+ men 20 women.) Ellie has info on the Cinco de Mayo Splash One Mile Swim this Saturday May 2, at Anaeho'omalu Bay at Waikoloa Beach Resort. It's the first swim race in the Triple Crown 2015 series that includes the Hapuna Roughwater Swim and the King's Swim. The Bikeworks Cinco de Mayo Swim is a benefit for the ALS TDI in honor of Karen O'Riordan Kelly and the Daniel Sayre Memorial Foundation. She has overview of the Ironman 70.3 Honu May 30 at Mauna Lani Resort. Ellie is also program director for LAVAKIDS and has an overview of the Running Clinics program. At about 30 minutes into the show, I get into a my walk around Kailua Village and share some of my thoughts about being mutually supportive of small business and I met up with my friend Mo Davis who introduced me to some very inspiring people so we taped some talk story.. Sandy and Gille Legacy, Mo Davis, Dolores Trenois and Barb Hussey share some heartwarming personal talk story about living life to the fullest regardless of challenges. - The Emily T Gail Shows are available at espnhawaii.com. There is a free iTunes podcast and Emily T Gail Talk Story on Facebook. I'm at 808 896-6780. aloha.

Ellie Sumic, Bikeworks Beach & Sport has info on the Bikeworks sponsored Cinco de Mayo Splash Saturday May 2 at Anaeho'omalu Bay at Waikoloa Beach Resort. It's the first swim race in the Triple Crown 2015 series that includes the Hapuna Roughwater Swim and the King's Swim. The Bikeworks Cinco de Mayo Swim is a benefit for the ALS TDI in honor of Karen O'Rioroan Kelly and the Daniel Sayre Memorial Foundation, two organizations Grant & Janet Higa-Miller, owners of Bikeworks tirelessly support. Ellie is a program director for LavaKids, the youth branch of Lavaman and she talks story about the success of their running programs and the involvement of the Waveriders Triathlon Club. The Ironman 70.3 aka Honu is May 30 at Mauna Lani Resort and we talk about the weekend event. Ellie grew up in Hawi which is the turnaround for the Ironman World Championships. She saw her first Ironman in 1981 as a teenager which was the first year it was held on the Big Island. It was also my first year participating in Ironman coming from Detroit with my partner Herb and being one of a few hundred participants in the early days. Fun to discover and reflect on that connection. We talk story about Ellie's many years of multi sport activities having been involved not just in triathlon's but having completed some of the most difficult events in outrigger canoe paddling. Fun to hear her enthusiasm for what sports have meant to her and like so many of the Bikeworks team members they give back to the community by encouraging and mentoring others.

Steve Perrin PhD, CEO and CSO of ALS TDI, talks Gilenya, other emerging immunomodulators and their potential to treat ALS going forward. Read more: http://blogs.als.net/post/2013/02/12/Gilenya-giving-ALS-the-fingo.aspx