Endpoints

For years, Lou Gehrig has been recognized as both a face of ALS and a legend of Baseball. But, until now, he did not have an official day dedicated to him by the MLB, unlike some of his fellow legends like Jackie Robinson and Roberto Clemente. That’s where the Haberstrohs come in. Tom, Steve, and Chuck Haberstroh are three brothers, with two big shared passions – baseball, and ending ALS. Their mother, Patty Haberstroh, was diagnosed with ALS in 2017. Since then they’ve gone on to raise awareness and money for the disease through fundraisers like the ALS Pepper Challenge. Recently, along with a group of other diehard baseball fans who were connected to ALS, they worked with the MLB to create an annual Lou Gehrig Day to both celebrate his legacy as a ballplayer and raise funds and awareness  for ALS. The first annual Lou Gehrig Day will take place throughout the league on June 2nd, 2021. Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

Today on Endpoints, we’re joined by Dr. Leigh Hochberg. He's the the Director of the Center for Neurotechnology and Neurorecovery at Mass General Hospital’s Department of Neurology and a neurologist in its Neurocritical Care and Stroke Services, a Professor of Engineering at Brown University, and the Director of the Veterans Affairs Center for Neurorestoration and Neurotechnology in Providence, Rhode Island. He’s also one of the leaders of the Braingate Consortium – a collaborative team of researchers from several hospitals and academic institutions working together on devices that aim to allow people with limited mobility to control devices directly with their brains. This technology – which also goes by the name Braingate – has already helped people with ALS, as well spinal cord injury and brainstem stroke survivors, do things like move a computer cursor using only the power of their minds. Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

Today we’re joined by David and Scott Lloyd, the brothers behind Racing for ALS. Growing up, David and Scott shared a love of fast cars, but as they got older, began careers, and had families, they kept putting off their dreams of auto racing. That all changed in 2017, when David was diagnosed with ALS. Realizing there was no better time than the present, David and Scott bought themselves a pair of high-performance cars and began organizing racing events to benefit ALS research. To learn more about Racing for ALS you can find them on: Facebook: https://fundraise.als.net/davesrace  Instagram: https://www.instagram.com/racingforals/. If you’re interested in participating in Dave’s Race 2020, visit https://fundraise.als.net/davesrace To access all episodes of the Endpoints Podcast, visit https://www.als.net/endpoints/. The Endpoints Podcast is produced by the ALS Therapy Development Institute.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: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

In this episode of the Endpoints, Dr. Steve Perrin, CSO at the ALS Therapy Development Institute, sits down to talk about AMX0035, a drug consisting of a combination of two small molecule compounds: sodium phenylbutyrate and tauroursodeoxycholic acid (TUDCA). Amylyx, the sponsor of AMX0035, recently completed enrollment of a 132 participant phase 2 trial. To learn more about the ALS Therapy Development Institute and our mission to end ALS, click here.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

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

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

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

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

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

In this episode, Dr. Fernando Vieira, CSO at the ALS Therapy Development Institute (ALS TDI), joins us to discuss Copper ATSM (CuATSM)clinical trials. CuATSM is a small molecule drug sponsored by the company Collaborative MedicinalDevelopment (CMD). They recently completed enrollment of a small, Phase 1 clinical trial in Australia. You can access all episodes of the Endpoints Podcast for free by visiting www.als.net/endpoints and registering.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

In this episode of the Endpoints, Dr. Fernando Vieira explains what we know so far about C9ORF72, a gene which has been implicated in up to 40% of cases of familial ALS. C9ORF72was discovered to be a cause of ALS 8 years ago but there is still a lot for researchers to learn about its unique characteristics. Dr. Vieira talks about some of the hurdles to overcome and what researchers are doing right now to try to address this mutation. You can access all episodes of the Endpoints Podcast for free by visiting www.als.net/endpoints and registering.Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

Andy McGovern was diagnosed with Motor Neuron Disease (MND) in April 1978 after experiencing symptoms for almost 2 years. In this podcast, Andy describes his life and journey with MND and how his faith helped him come to terms with living with this disease. Andy, who is now 86, has been living with MND for 41 years and has written two books, including his autobiography, Against the Odds: Living with Motor Neurone Disease. The Endpoints Podcast is hosted by the ALS Therapy Development Institute. To access all episodes of the Endpoints Podcast, visit www.als.net/endpoints.Support the show.

In this episode, Katie Bauer sits down to talk about her life as a caregiver to her husband, Charlie, as he battled ALS, while also being a mom to their young daughter, Grace. Charlie passed away in 2016 but Katie continues to advocate for those with ALS and helps fund research at ALS TDI in an effort to find effective treatments and cures for ALS. She has recently written a book about her life as a caregiver and other life lessons called ‘Finding my Reflections’. Support the show.

In this episode of the Endpoints, Dr. Steve Perrin, CEO at the ALS Therapy Development Institute, talks about Regulatory-T cells or Tregs as a potential treatment for ALS. Regulatory T cells are a type of lymphocyte, or white blood cell which play an immunosuppressive role in our bodies.  Access all episodes of the Endpoints Podcast.Support the show.

In this episode Dr. Steve Perrin, CEO at the ALS Therapy Development Institute and Dr. Fernando Vieira, CSO at ALS TDI join us to talk about Antisense Oligonucleotides (ASOs). ASOs are molecules, mostly DNA, that are specifically designed to target and suppress the expression of a specific gene. They work by binding directly to messenger RNA (mRNA) and block it from producing a specific protein. Access all episodes of the Endpoints Podcast.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. Access more episodes of the Endpoints Podcast.Support the show.

Nobody knows ALS better than people living with the disease. Therefore, it’s crucial for scientists to utilize the perspectives of people with lived experience in their research. Earlier this year, ALS TDI joined with Her ALS Story—a group of women diagnosed with ALS before the age of 35—to put on a series of Town Hall webinars that highlighted the importance of this connection. The three-part series featured discussions about ALS risk factors, lesser-known symptoms, and stories of diagnosis. In each session, researchers from ALS TDI’s ALS Research Collaborative, or ARC Study, presented information about our current scientific understanding of each topic, while Her ALS Story members shared their own personal experiences. Today, on Endpoints, we’ll hear some highlights from each episode of the series. We’ll also be joined by Dr. Danielle Boyce, ALS TDI’s Principal Investigator, Real World Evidence, and Alan Premasiri, our Director of Clinical Operations, to discuss what they learned from the discussions and how conversations like these can help shape the way they approach their research. If you'd like to learn more about ALS TDI's research and how we are incorporating lived experience to advance research, consider attending the ALS TDI Summit on October 17th, 2025 in Boston, MA or online. Register here: https://fundraise.als.net/alssummit/Support the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

Brain-computer interfaces, or BCIs, aim to enable people to control various adaptive devices directly with their thoughts. There are many BCI devices currently in various stages of development, with the potential to help people with ALS and similar conditions across many different activities of daily life. One particular area in which BCI devices may be able to support people with advanced ALS symptoms is communication. Many people with ALS rely on devices such as smartphones, tablets, and laptops to write or speak. All tools like these, collectively known as augmentative and alternative communication or AAC devices, need some kind of input to work.  This could mean using a keyboard, a touchscreen, or, for people with advanced paralysis, an eye-gaze device. As ALS progresses, however, even eye gaze devices may become difficult for some people to use. BCIs—by allowing people to control AAC devices with their minds—could be a potential solution to this problem.  Today, on Endpoints, we’re joined by two experts to discuss BCI technology and, in particular, its potential to help people with ALS continue to communicate. The views expressed in this podcast are those of the speakers and do not represent official endorsements by any organization. Kate Nilsen currently serves as an advisor to Synchron, a company developing a brain-computer interface (BCI) device. This device is investigational and is currently in clinical trials approved by the U.S. Food and Drug Administration (FDA). For those interested in staying informed about Synchron’s ongoing work and updates, please join the Synchron community: https://link.edgepilot.com/s/4239f747/ca21cbCpKkOSLI5ZXNqTdQ?u=https://www.synchronbci.com/StayConnected.htmlSupport the show: https://www.als.net/donate/See omnystudio.com/listener for privacy information.

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.