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CReATe Connect podcasts are short recorded interviews on topics we hope will be of interest to patients with ALS and other motor neuron diseases.
79 Episodes
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Here we review ashwagandha a nutritional supplement that has plausible mechanisms for slowing ALS, promising pre-clinical evidence, and a reasonable safety profile. There is one person with ALS who experienced a reversal of symptoms on a cocktail of treatments that included ashwagandha. Cases like this are difficult to interpret as there can be multiple explanations for a person experiencing an ALS reversal. We have not found any other cases suggesting improvement on this product. We hope to see the data from the completed phase 2 trial soon.
Dr. Johnathan Cooper-Knock is a neurologist and clinical lecturer at the University of Sheffield. His research focuses on genetic causes of ALS. Here he discusses his recent publication “Extreme exercise in males is linked to mTOR signalling and onset of amyotrophic lateral sclerosis”.
Here we review Zinc supplements as a treatment for ALS. These are inexpensive, reasonably safe at certain doses, and are easy to acquire. They have plausible mechanisms by which they could slow ALS progression. However, the data from people living with ALS is not very convincing yet.
Dr. Terry Heiman-Patterson is a neurologist and professor at Temple University and the director of the Center for Neurodegenerative Disorders and the MDA/ALS Center of Hope. Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. In this podcast they will be discussing their recent publication “Guidance for clinical management of pathogenic variant carriers at elevated genetic risk for ALS/FTD”.
Dr. Ruben van Eijk is an associate professor in the Department of Neurology at the University Medical Center Utrecht in the Netherlands as well as a statistical consultant and medical statistician for the clinical trial methodology group at the Julius Center also in Utrecht. Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication “Rethinking phase 2 trials in amyotrophic lateral sclerosis”.
Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. Here he discusses the recent publication “Prognostic clinical and biological markers for amyotrophic lateral sclerosis disease progression: validation and implications for clinical trial design and analysis”.
Dr. Jesse Crayle is a clinical neuromuscular fellow in the Department of Neurology at Washington University in St. Louis and Dr. Evadnie Rampersaud is a Principal Bioinformatics Research Scientist at St. Jude Children’s Research Hospital. They will be discussing their publication “Genetic Associations With an Amyotrophic Lateral Sclerosis Reversal Phenotype.”
Nuedexta is a combination of dextromethorphan and quinidine, and is FDA approved for treating “pseudobulbar affect” (a symptom complex where patients lose control of their laughing and crying). Here we summarize recent trials suggesting that Nuedexta might also help bulbar function (speech, swallowing and oral secretions). We also discuss important risks, monitoring, and insurance coverage.
Lions Mane is a mushroom that has neuroprotective, neurotrophic, antioxidant, and anti-inflammatory properties. Here we review what is known about its use in ALS models as well as patients living with the disease.
Insulin is a hormone most commonly used to lower blood sugar in people with diabetes. Here we talk about some theoretical ways it might help help people with ALS, as well as the lack of convincing case reports or trials and the risks.
Caffeine is a chemical most of us ingest every day. In addition to its stimulant properties, there are some theoretical ways it could help slow ALS progression. Here we discuss the contradictory pre-clinical models and the lack of a convincing relationship between caffeine intake and ALS progression in natural history studies.
Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. Here he discusses the recent publication “The Miami Framework for ALS and related neurodegenerative disorders: an integrated view of phenotype and biology”.
Dr. Caroline McHutchison is a Neuropsychologist and CReATe Clinical Research Scholar at the University of Edinburgh and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication “Temporal course of cognitive and behavioural changes in motor neuron diseases”.
Dr. Chad Heatwole is a Professor of Neurology and the Director of the Center for Health and Technology at the University of Rochester Medical Center and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication “The amyotrophic lateral sclerosis-health index (ALS-HI): development and evaluation of a novel outcome measure” and its role as a patient reported outcome measure for ALS.
Sodium chlorite is an experimental drug targeting macrophage activation. It exists in different formulations. An oral formulation has potentially deadly side effects. An IV formulation called NP001 has been in recent trials targeting a subset of people with ALS. Here we review the interesting development of this product and where we expect that to go in the near future.
Rituximab is an intravenous product that reduces B lymphocytes. It can help improve strength in patients with myasthenia gravis and multi-focal motor neuropathy, neuromuscular diseases that are caused by circulating antibodies made by B lymphocytes. In this podcast we examine the possible use of rituximab to treat patients with ALS
Ozone is an oxidizing agent which has some surprisingly plausible mechanisms by which it could influence ALS progression. It can also be dangerous. The FDA has warned against using it as a treatment for any disease. Further studies are needed to determine whether there is any dose or route of administration that might be safe and effective for use in people with ALS.
Astaxanthin is a naturally occurring chemical which has plausible mechanisms for treating ALS and appears reasonably safe and well tolerated in non-ALS trials. We look forward to ALS-specific trials planned later this year which should shed important light on whether this is specifically safe for people with ALS, and whether it really can slow ALS progression.
Dr. Martin Turner is a Professor of Clinical Neurology & Neurosciences at the University of Oxford and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication “Neurofilament light chain in drug development for amyotrophic lateral sclerosis: a critical appraisal”, and the potential role of NfL as a biomarker for ALS. This is part I of a two part series.
Dr. Martin Turner is a Professor of Clinical Neurology & Neurosciences at the University of Oxford and Dr. Michael Benatar is a Professor of Neurology and Chief of the Neuromuscular Division and Executive Director of the ALS Center at the University of Miami. They will be discussing their recent publication “Neurofilament light chain in drug development for amyotrophic lateral sclerosis: a critical appraisal”, and the potential role of NfL as a biomarker for ALS. This is part II of a two part series.
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