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 ...
Jun 28, 2022•22 min
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,...
May 13, 2022•23 min
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....
Apr 15, 2022•18 min
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 r...
Mar 01, 2022•21 min
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 ...
Jan 12, 2022•24 min
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 bor...
Jan 06, 2022•18 min
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 e...
Dec 16, 2021•21 min
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 5...
Nov 16, 2021•17 min
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 i...
Nov 08, 2021•15 min
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 wa...
Nov 01, 2021•17 min
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 tre...
Oct 25, 2021•24 min
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 h...
Sep 17, 2021•17 min
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. Support the show: https://www.als.net/donat...
Sep 08, 2021•8 min
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...
Aug 10, 2021•12 min
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 awarenes...
May 14, 2021•22 min•Season 2Ep. 2
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 resea...
Feb 26, 2021•28 min•Season 2Ep. 1
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/donat...
Dec 29, 2020•13 min
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 ne...
Dec 29, 2020•22 min
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 h...
Dec 03, 2020•17 min
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...
Sep 01, 2020•31 min
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 improve the lives of people living with ALS around the world. Support the show: https://www.als.net/donate/ See om...
Aug 13, 2020•19 min
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 first steps in the process that lead to the invention of this drug – the research into the mechanisms of how ALS ...
Aug 11, 2020•30 min
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 https://clinicaltrials.gov/ and search for ALS. Support the show: https://www.als.net/donate/ See omnystudio.com/listener for privac...
Jul 07, 2020•24 min
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 were accurate. This process is known as validation in the context of drug discovery. Today on Endpoints we’re joined by...
Jun 03, 2020•14 min
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, and even as employees. Today, we’re joined by the Reichs, who share their story of working to end ALS – together as a...
May 29, 2020•25 min
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 pair of high-performance cars and began organizing racing events to benefit ALS research. To learn more ab...
Feb 07, 2020•20 min•Season 2Ep. 2
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 used at the ALS TDI lab, CMAP can be used to detect and track disease progression before signs would be n...
Jan 27, 2020•17 min•Season 2Ep. 1
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 Development Institute and our mission to end ALS, click here. Support the show: https://www.als.net/donat...
Oct 31, 2019•9 min•Season 1Ep. 19
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 ventilation. To access all episodes of the Endpoints Podcast, visit als.net/endpoints . Support the show: https://w...
Oct 16, 2019•21 min•Season 1Ep. 18
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 with ALS. To access all episodes of the Endpoints Podcast, click here. Support the show: https://www.als....
Oct 15, 2019•7 min•Season 1Ep. 13
