Endpoints

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. 

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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.

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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.

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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.

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If you aren’t already, you should be tuning in to I’m Dying to Tell You. It’s a podcast about inspiration, full of compelling interviews with people who have faced incredible challenges – including many people from the ALS community.

However, one of the most incredible things about the show is the story of the podcast itself – it's hosted by Lorri Carey, who has been living with ALS since 2004. Lorri brings her own experience dealing with a debilitating, terminal illness to every interview on her show.

Today, she joins us to tell us about her own ALS story, how her podcast got started, and what she’s learned from talking to so many deeply inspiring people.

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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.

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The Complement system is an intriguing potential pathway for treating ALS. It’s an essential part of the immune system – and many researchers believe its dysregulation could play a role in some cases of ALS. A class of drugs known as “complement inhibitors” seek to treat ALS by targeting certain proteins that are part of the complement system, also known as the complement cascade. 

On Endpoints, we’ve previously discussed one complement inhibitor that’s in trials as a treatment for ALS, Alexion’s Ravulizimab. Today, we’re looking at another potential treatment – Pegcetacoplan, a C3 inhibitor that’s currently in a phase 2 trial for ALS sponsored by the company Apellis.

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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. 

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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. 

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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 

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