Endpoints

Project Relate is an app for Android phones and tablets that aims to use the power of voice recognition technology to help people with dysarthria, or difficulty speaking, in their day-to-day lives. The app is a product of Project Euphonia – a program founded by Google and Harvard researchers in collaboration with ALS TDI. Although it’s since expanded to include other conditions that might affect someone’s speech, the project was founded using data collected through ALS TDI’s ALS Research Collaborative (ARC) Study. 

Today, on Endpoints, we’re joined by Pan-Pan Jiang, a Technical Project Manager for Project Relate, to tell us more about how the app works, how it can help people with ALS, and how ALS TDI’s ARC data was instrumental in its development.

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Antibodies are an essential part of our bodies’ defenses against diseases. They are specialized proteins that attack and kill foreign invaders like infectious bacteria and viruses.

Antibodies are normally naturally produced by our immune system in response to an infection. However, in recent years, scientists have learned to produce antibodies in a lab to treat a variety of diseases.  Several Antibody treatments have been investigated in ALS, including tegoprubart, which was invented by ALS TDI and recently successfully completed a phase 2a clinical trial.

Dr. Silvia Pozzi is Assistant Professor at the Université Laval’s Brain Research Center in Quebec City specializing in ALS Research. She recently was an author on a paper reviewing the current state of antibody therapies for ALS.  She joined us on Endpoints to discuss the current outlook for these therapies in the ALS space – as well as what the future might hold for these treatments.

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ALS can happen to anyone. Although many outside of the ALS community often think of it as a disease that affects older people, onset can occur at any age, in any person, for reasons that are not understood.

Take, for example, Ajay Sampat. He’s 36 years old, he has a wife and two young children, and works as a neurologist specializing in sleep disorders. Earlier this year, he was diagnosed with ALS.

Facing a terrible diagnosis like ALS at such a young age is, of course, unimaginable for anyone who hasn’t experienced it. But, with the help of his family and friends, Ajay is working to make sure he can live as fully as possible with the time he has.

Today, Ajay joins us to talk about what it was like going through all this, and how checking things off his bucket list since he received his diagnosis has been helping him process it all.

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Celecoxib is a non-steroidal anti-inflammatory drug, or NSAID. Ciprofloxacin is an antibiotic that is used to treat a number of bacterial infections. The former has been trialed unsuccessfully in ALS. However, according to preclinical evidence and a phase 1 trial conducted by Neurosense, a biotech company based in Israel and Cambridge, MA, these two FDA-approved drugs may hold some promise for people with ALS when combined into one treatment.

Neurosense’s formulation of these two drugs is known as Prime C. The first participants were recently enrolled in a Phase 2b trial of the treatment, and it is also currently undergoing a pharmacokinetic trial in healthy volunteers. Recently, several members of Neurosense’s team joined Endpoints to help us learn more about the company’s mission, the science behind prime C, and what’s next for the potential ALS Treatment.

Episode Guide:

1:22 – NeuroSense's Company Story

5:58 – The Science Behind Prime C

15:13 –Details about Prime C in Clinical Trials

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20 years. More than 5000 miles, give or take. Thousands of riders. Countless hugs, tears, and cheers from the side of the road. And, if everything goes according to plan, $10 million raised for research to end ALS.

The Tri-State Trek has built quite a legacy over the past two decades, and there is no better time to celebrate it than June 24-26th 2022 – the year that will mark the 20th annual Trek, as well as the return to its traditional three day, 270-mile format.

The Trek started back in 2003, with 16 cyclists pedaling from Boston to New York and raising $30,000 for ALS research along the way. Since then, it has grown to become the marquee fundraising event for the ALS Therapy Development Institute, with hundreds of riders each year raising hundreds of thousands of dollars to help end ALS.

It’s also become something of a yearly family reunion – from the cyclists who return to ride year after year, to the volunteers who make the event run smoothly, to the supporters who show up to cheer everyone on, the event has fostered a strong community throughout its 20 years.

To celebrate the 20th Trek, we talked to Ride Marshall Kevin Porter and Bike Mechanic Ric Starry – two people who have been volunteering for the ride since nearly the beginning, and the namesakes of the Starry-Porter award for outstanding trek volunteers – about what keeps them coming back, year after year.

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There are currently no effective treatments available for ALS. Because of this many people living with ALS turn to Clinical Trials, both to get a chance to receive a potentially beneficial treatment and to help push forward the scientific effort to end the ALS. It’s not an easy commitment –participants may have to travel to faraway sites to receive treatment, undergo uncomfortable or even painful procedures, and face the chance that, in many trials, they may be randomized into the placebo group.

José Fajardo, a radio producer and executive living in Hawaii who was diagnosed with ALS in 2019, elected to take on some remarkable challenges in order to join a clinical trial, including traveling for regular site visits all the way from Hawaii to Texas.

Today, he joins us on Endpoints to talk about his story, how he decided a clinical trial was right for him, and what his experience was like.

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Regulatory T cells, also known as Tregs, are specialized cells that are part of the immune system. As the name implies, they help regulate the body’s immune natural immune response, among other functions

According to some studies, the dysregulation of TRegs may play a role in several neurodegenerative disease. Coya Therapeutics is a Texas based biotech company working to utilize TReg therapies to treat these diseases – including ALS. Their ALS treatment completed a Phase 2a study in 2021, with results to be published later in 2022. They are also planning a phase 2b study later this year.

Today, on Endpoints, we’re joined by Dr. Adrian Hepner, Coya’s Chief Medical Officer, to talk about how TRegs might be able to help people with ALS, give an update on the Phase the phase 2a study, and discuss plans for the next steps.

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Sally Stewart knows wine. It’s the focus of her career, and her great passion. As a sommelier, she’s worked in great restaurants in places like Portland, Oregon, Telluride, Colorado, and New York City. Her career was in a great place – she had a resumé that included restaurants at a world-famous ski resort, a restaurant with a Michelin star, and even one founded by food legend Wolfgang Puck.

That all changed when, at the age of 31, she was diagnosed with ALS.

However, Sally found a way to adapt – and, even when she couldn’t work in restaurants anymore because of her progression, to stay involved with her passion. Today, she’s the co-owner of the Denver Wine Merchant, a store in Colorado that sells fine wines, beers, and liquor, hand-picked by Sally and her Co-owner/partner Stephen. This year, they also had a particularly special product on the shelves – an ALES for ALS beer from Nederland, Colorado’s Knotted Root brewing company, whose help sales support the critical research at ALS TDI.

Today, Sally joins us on Endpoints to talk about her story, making an ALS-inspired career pivot, and how she’s working to support others dealing with the disease.

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In 2018, ALS TDI began working a big collaboration with a partner you’ve probably heard of – Google.

At the time, Google was looking to put their artificial intelligence technology to use to help develop better speech recognition software for people with conditions that affect their ability to talk. ALS TDI was the perfect partner to launch this effort with, having already collected a wealth of voice recordings as part of our ALS Research Collaborative (ARC) Study.

Thus, Project Euphonia was born. Utilizing ARC data, Google researchers began working to train their AI speech recognition tools to better understand people with ALS-affected speech, as well as other conditions. Today, this collaboration is beginning to bear fruit, with the early testing of Project Relate, the first app made available to the public from Project Euphonia.

Today, on Endpoints, we’re joined by Google’s Julie Cattiau, a product manager for Project Euphonia, to tell us about the history of this collaboration, what people can expect from the new app, and what might be coming in the future.

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One of our most powerful new tools in recent years for in vitro experiments are something called induced pluripotent stem cells, or iPSCs. iPSCs are created with a technique that allows scientists to take living cells, often skin cells, from an adult human and revert them to the state of a stem cell, which can then be grown into any kind other kind of cell in the body – including cells affected by ALS like motor neurons.

To further explain what an iPSC is and how we use them in our research to end ALS, we’re joined today by Dr. Kyle Denton, ALS TDI’s director of Cell biology.

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