Endpoints

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...

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 l...

10 years ago, today – August 13, 2010 – the doors of the Steve Saling ALS Residence were opened. The residence combines the use of high-tech, accessible automation with specially trained 24/7 caregivers to provide an independent living environment for people living with ALS. Today, Steve joins us to talk about how the ALS Residence came to be and how he hopes its model could someday im...

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 fi...

Today on Endpoints, ALS TDI CEO Dr. Steve Perrin joins us to answer some frequently asked questions about clinical trials: how the process works, and what you can – and can’t – expect when you sign up to participate. To find more information about drug trials for ALS, you can visit our website here:  https://www.als.net/als-research/als-clinical-trials/  or check out&nb...

At ALS TDI, our mission is to find effective treatments for ALS. Often that involves trying to invent new drugs of our own, but it can also mean trying to see if treatments developed by others are promising. To do this, we perform something called “replication studies” – trying to recreate and optimize the experiments performed by other researchers to confirm that their results w...

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,...

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...

 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...

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 Devel...

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 ventilatio...

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...

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 s...

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 r...

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 regis...

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 v...

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...