Endpoints

Note: Since this recording, David Lloyd passed away in July of 2023. His legacy lives on through Racing for ALS, and in the more than $1 million he helped to raise to support ALS Research.

Scott and David Lloyd first joined us on Endpoints in 2020. The two brothers shared their story about how David’s ALS diagnosis inspired them to pursue a lifelong dream – racing high-performance cars. This passion grew into Racing for ALS, an organization that has raised almost $1 million to date through high-performance driving events, all in support of ALS research, care, and services.

Since that first conversation, much has changed for the Lloyd Brothers and Racing for ALS. The organization has grown significantly, going from putting on one annual event, Dave’s Race, to several across the country. However, their mission remains the same – to spread awareness, raise funds, and rally the performance-driving community in support of ending ALS.

Today, Scott returns to Endpoints to say more about what’s changed over the past three years, what’s stayed the same, and what’s next for Racing for ALS.

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 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.

When we talk about ALS, we often make a distinction between types of the disease: 90% of cases appear to be sporadic – meaning there is no family history of the disease. The opposite is true of the other 10% – known as familial ALS or genetic ALS. In these cases, the disease can sometimes be traced back in a family for generations. 

Behind this phenomenon are a number of inherited mutations in genes with names like SOD1, FUS, C9orf72. With the advent of widely available genetic testing, people with a family history of ALS are now able to find out if they carry these mutations – and are thus likely to develop the disease.

When Jean Swidler was a child, she lost her grandmother to ALS. Then as, an adult, her mother was diagnosed with the disease. Eventually, Jean herself underwent genetic testing and discovered that she carries the C9orf72 repeat-expansion mutation. 

Since then, Jean has become a tireless advocate for asymptomatic carriers of ALS-related genetic mutations. Today, she joins us to talk about her story, her advocacy, and how she believes the medical and research establishment could be better serving people in her situation. 

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.

Please note that the study described in the podcast episode, the COURAGE-ALS Phase 3 Study for reldesemtiv, was terminated on March 31st, 2023 for futility ­– meaning that an unblinded analysis was conducted on data by an independent committee while the trial was still ongoing, and it was determined that there was no evidence of an effect.

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.

Normally, you’d expect the subject matter of the videos you see while scrolling through TikTok to be light – funny skits, cute animals, dances, maybe a recipe or two. However, when one of Brooke Eby’s videos comes into your feed, you’ll notice it’s a little different from your average clip. Her TikToks may still be funny and full of jokes, but the subject matter – living with ALS as a young woman – is anything but light. 

Brooke was 28 years old when she experienced her first symptoms – weakness in her left foot, which continued to spread throughout her leg. At the time, she was living in New York City and working in tech. It would be four years before she received her diagnosis at the age of 33.

Of course, this was a shocking development for an active, young woman like her at first. Every person with ALS finds their own way to process such a devastating diagnosis – for Brooke, the solution was to turn to her strong sense of humor and look for the lighter side of things. Since she started sharing her story on TikTok, her videos have attracted more than 18,000 followers to her account and received millions and millions of views.

Today, Brooke joins us on Endpoints to talk about living with ALS as a young woman, and how she’s working to spread ALS awareness with humor on social media.

If you would like to support research to find cures for ALS, you can make a gift here. 

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.