Endpoints ALS TDI

One of the most common misconceptions about ALS is that it only affects older white men. In reality, the disease can affect anyone of any age – and of any ethnicity.

Many Shades of ALS, a team within the I AM ALS organization, is working hard to dispel some of these misconceptions. Their mission is to bring attention to people of color living with ALS and the unique challenges they often face – as well as providing resources for their mental, physical, and social well-being.

Juan Reyes is a veteran living with ALS, an advocate, and co-chair of Many Shades of ALS team. Lakeia Nard is a member of the team who lost her son, King’nazir, to a rare form of pediatric ALS and also runs her own nonprofit, Melanin Children Matter. Today, on Endpoints, they join us to talk about how the team came together, its mission, and how the ALS research and medical communities could be better serving people of color with the disease.
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When dealing with a disease like ALS, it can be hard to know where to turn for reliable information and advice. While your doctor and care team might be able to provide some answers to your questions, there are many topics that they might not be equipped to handle. There are many resources available on the internet, but it can be hard to know if you’ve found a reputable source.

Roon is an app that help solve this problem. It provides answers to questions about disease, including ALS, in the form of short video clips featuring researchers, doctors, caregivers, people with the disease, and more. They provide information about topics like treatments, current research into the causes of the disease, and advice about to day-to-day life.

Today, on Endpoints, we’re joined by Roon’s co-founder and CEO Vikram Bhaskaran to tell us more about the app, and how his own personal experience with ALS helped inspire it.
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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 PTC Therapeutics phase 2 trial for PTC 857.

There are currently no treatments to stop or reverse ALS but the ALS Therapy Development Institute is working to change that. To learn more about ALS TDI and our research to end ALS, visit ALS.net
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Andrea Lytle Peet’s passion for running started simply enough. At age 30, she had just moved to Washington, D.C. to be with her husband, David. Stuck in their house during the snowy D.C. winter, she started walking on a treadmill in their basement to keep active. Soon, she had signed up for a local 5k. Then she stepped up to a 10 miler. Then came marathons and triathlons. Within three years, she had begun training for a half ironman.

Then, at the age of 33, everything changed when she was diagnosed with ALS. In four months, she went from the strongest she had ever been to walking with a cane. However, this would not be the end of her athletic career. Despite having ALS for almost a decade, she is still able to ride a recumbent bike, which she has used to continue to participate in marathons all over the country. Recently, she reached a major milestone – completing at least one marathon in all 50 states.

To commemorate this accomplishment and share her story to inspire others, Andrea is releasing two documents of her journey – a film, Go On, Be Brave and a memoir, Hope Fights Back. 

Today, on Endpoints, Andrea and David join us to talk about how she achieved these accomplishments in the face of such adversity, and why they believe it’s important to share her story with the world.
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Finding more accurate ways to measure ALS progression is one of the most important challenges facing scientists today. More sensitive, objective ways of measuring how the disease is affecting people could help make clinical trials faster and more efficient. Achieving this is one of the primary goals of the ALS Research Collaborative (ARC) – a program at ALS TDI that seeks to learn more about ALS by gathering data about the disease and sharing it with researchers all over the word.

One way we do this is to collect movement data by sending people with ALS wearable accelerometers – devices that track movement much like a smart watch. By wearing these devices on each wrist and ankle, participants can generate data about how their disease is affecting their movement over time.

Recently, researchers from Massachusetts General Hospital partnered with ALS TDI scientists to analyze these data and demonstrate that these devices can be used as a reliable measure of ALS progression. A paper detailing their findings titled, At-Home Wearables and Machine Learning Sensitively Capture Disease Progression in Amyotrophic Lateral Sclerosis, was published in the journal Nature.

To tell us more about this research project and what it means for people with ALS, we’re joined by Dr. Anoopum Gupta, a Neurologist at MGH and the paper’s lead author.
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ALS TDI’s ALS Research Collaborative (ARC) is a global initiative that partners with people with ALS to gather data about the disease to help us better understand the underlying biology of ALS and accelerate the discovery of treatments. Recently, ALS TDI announced a partnership with Unite Genomics, a healthcare data analytics company, that will allow us to integrate a new data source into the program – electronic health records (EHRs).  

Today, on Endpoints, we’re joined by Unite Genomics CEO Taner Dagdelen, to tell us more about what this collaboration entails, what researchers can learn from EHR data, and what this means for present and future ARC participants. 
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