21 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 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.

Endpoints ALS TDI

    • Science
    • 5.0 • 10 Ratings

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.

    Braingate: Helping People with ALS Control Devices with their Minds

    Braingate: Helping People with ALS Control Devices with their Minds

    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.

    • 27 min
    Lisa Cross Bonahoom: Fighting ALS for Herself and Her Family

    Lisa Cross Bonahoom: Fighting ALS for Herself and Her Family

    Today we’re joined by Lisa Cross Bonahoom. Lisa is a teacher, singer, actor, director, choreographer, and dancer who was diagnosed with ALS about three years ago. She brings us a story of how this disease has changed her life – but also how it’s inspired her to become an activist and fundraiser. It’s a story of how her family has inspired her to keep up the fight. And, especially, it’s a story of how she’s kept dancing through it all.SIGN IN TO LISTEN 

    Support the show: https://www.als.net/donate/

    See omnystudio.com/listener for privacy information.

    • 13 min
    Neurofilament Light Chain: A Potential ALS Biomarker?

    Neurofilament Light Chain: A Potential ALS Biomarker?

    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 CEO Dr. Steve Perrin joins us to talk about  what a biomarker is, how they’re used in drug research, and a promising possible biomarker for ALS and other neurodegenerative diseases: Neurofilament Light Chain.

    Support the show: https://www.als.net/donate/

    See omnystudio.com/listener for privacy information.

    • 22 min
    Daniel Barvin: Working to Create a Future Without Familial ALS

    Daniel Barvin: Working to Create a Future Without Familial ALS

    Finding out a loved one has ALS can be hard enough. But for people whose family members test positive for one of the genetic mutations behind familial ALS, it can bring a whole other set of issues to deal with – knowing that they might also inherit the mutation, and that they might pass it down to your children.

    Daniel Barvin knows this firsthand – a number of people in his family have passed from ALS, and he himself is a presymptomatic carrier, meaning it may only be a matter of time until he himself begins to show signs of the disease. Today, he joins us on Endpoints to discuss what it’s like to know that ALS is likely part of his future, and what he’s doing to change things – both for himself, others with ALS, and his own newborn son.  

    Donate to ALS research in honor of Daniel here. 

    Support the show: https://www.als.net/donate/

    See omnystudio.com/listener for privacy information.

    • 17 min
    CHAMPION-ALS: Alexion Discusses their Phase 3 ALS Trial

    CHAMPION-ALS: Alexion Discusses their Phase 3 ALS Trial

    Today, we’re happy to be joined by representatives from one of our partners in the industry, Alexion – a biotech specializing in rare diseases – to talk about the company and it’s upcoming CHAMPION-ALS trial. Champion-ALS is a phase Three trial of Ravulizimab, also known by the brand-name Ultomiris, a drug that targets part of the immune system called the complement system. The drug is already approved for use in some rare blood disorders, but there is evidence that the complement system may also play a role in ALS pathology.

    Support the show: https://www.als.net/donate/

    See omnystudio.com/listener for privacy information.

    • 15 min
    Joe Lynch and Larry Cepuran: Living with ALS and Supporting ALS TDI

    Joe Lynch and Larry Cepuran: Living with ALS and Supporting ALS TDI

    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.

    • 30 min

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