Inviting research community to advance the Diagnosis and Prognosis of ALS from Speech
https://www.everythingals.org/research Our study uses advanced computation technology and speech, audio and video data. You can participate if your voice is normal or affected by ALS. You will have access to your own recordings and feedback of analysis of your speech. Your data is protected and stored unidentifiable (anonymous) following the FDA IRB approved privacy protocol. Your data is worked on by MIT, Mass general, IBM, UT Austin, Google Euphonia, CMU etc. We are looking for Individuals Diagnosed or Probable with Amyotrophic Lateral Sclerosis (ALS) and Healthy Participants between 18 and 100 years of age. Our study is motivated by the need for early detection and improved prognostic accuracy of ALS using advanced computational technology and speech data (audio, video). By participating in this study, you will contribute to a growing large ALS data set and further advance current knowledge relating to the decline in speech production due to ALS while also improving the performance of this technology. The approach will be to perform analysis of online audio/video recordings: The study activity involves the use of web-based software that collects speech audio and video data and then uses AI and machine learning algorithms to analyze facial and speech metrics. Data collection can be conducted anywhere you feel comfortable (e.g., your home). Each session will last approximately 20 minutes. Participants are welcome to do multiple sessions if interested. Protocol Number: 2020-06-PI42 | Sponsor: Peter Cohen Foundation Principal Investigators: Aria Anvar, MD, MBA, Indu Navar Bingham, MS
Biomarkers in ALS to Aid in Earlier Diagnosis, Clinical Trials, and Monitor Impact of Therapies.
Guest Speaker Dr. Robert Bowser, Ph.D. will discuss Biomarkers in ALS to Aid in Earlier Diagnosis, Select Patients for Clinical Trials, and Monitor Impact of Therapies. Dr. Robert Bowser, PhD is an internationally-recognized leader in ALS research. He has pioneered the research into the discovery and validation of biomarkers for ALS. These biomarkers can be useful for diagnosis and for measuring disease progression. Biomarkers are quite useful in assessing the effectiveness of drugs in clinical trials, including the recently published topline Phase 3 results for the NurOwn mesenchymal stem cell therapy. As director of the ALS Research Center, Dr. Bowser directs research to determine the underlying mechanisms of ALS, identify new targets for drug treatment, develop improved therapies for ALS, and lead clinical research studies performed in numerous medical centers throughout North America.Dr. Bowser obtained his PhD from Yale University. He performed fellowship training at the Albert Einstein College of Medicine. He joined the faculty at Barrow Neurological Institute in 2011. Now he runs the Bowser Lab at Barrow, which is conducting landmark research into ALS. The goal of the Bowser Lab is to develop diagnostic biomarkers for ALS and to identify biochemical pathways that are altered early in disease. ALS is a heterogeneous disorder, which makes finding effective treatments challenging. The best treatment will likely be a combination of drug therapies. If, however, we could identify subpopulations of ALS patients, it might be possible to create a more personalized approach to treatment. The Bowser Lab is exploring methods to identify biomarkers that distinguish subpopulations of ALS patients. These biomarkers could be useful for targeting drug treatments to subpopulations that have a higher probability of responding to treatment. Mutations in two RNA binding proteins (TDP-43 and FUS) cause familial forms of ALS. This highlights the importance of normal RNA metabolism in the health of motor neurons. The Bowser Lab has discovered additional RNA and DNA binding proteins that are altered in ALS patients. Dr. Bowser is the author of 194 peer-reviewed studies that you can find on PubMed.gov. Among those studies are the following: Neurofilaments in pre-symptomatic ALS and the impact of genotype (2019) Fluid-Based Biomarkers for Amyotrophic Lateral Sclerosis. (2017) Multicenter validation of CSF neurofilaments as diagnostic biomarkers for ALS. (2016) Label-Free LC-MS/MS Proteomic Analysis of CSF Identifies Protein/Pathway Alterations & Candidate Biomarkers for ALS. (2015). RBM45 Modulates the Antioxidant Response in ALS through Interactions with KEAP1. (2015) Glycolysis upregulation is neuroprotective as a compensatory mechanism in ALS. (2019) Lipid and polymer blended polyester nanoparticles loaded with adapalene for activation of retinoid signalling in the CNS following IV administration. (2019) Immunoprecipitation & mass spectrometry defines an extensive RBM45 protein-protein interaction network. (2016) Artificial intelligence in neurodegenerative disease research: use of IBM Watson to identify additional RNA-binding proteins altered in ALS. (2017).
Wahls Protocol, Using Nutrition for Cellular Health
Our Guest Speaker, Dr. Terry Wahls, MD., is the author of Wahls Protocol talks to us about Cellular health and ALS. She is also a patient with secondary progressive multiple sclerosis. Dr. Wahls restored her health using a diet and lifestyle program she designed specifically for her brain. Dr. Terry Wahls is a clinical professor of medicine at the University of Iowa where she conducts clinical trials. She is also a patient with secondary progressive multiple sclerosis, which confined her to a tilt-recline wheelchair for four years. Dr. Wahls restored her health using a diet and lifestyle program she designed specifically for her brain and now pedals her bike to work each day. She conducts clinical trials that test the effect of nutrition and lifestyle interventions to treat MS and other progressive health problems. She also teaches the public and medical community about the healing power of the Paleo diet and therapeutic lifestyle changes that restore health and vitality to all citizens. Find additional information on Dr. Terry Wahls below: https://terrywahls.com/about/about-terry-wahls/
Amylyx's ALS Drug AMX0035 shows promising Phase 2/3 Clinical Trial Results
Our Guest Speakers, Dr. Merit Cudkowicz and Dr. Sabrina Paganoni, the principle investigators at the HEALEY Platform Trial will be discussing the results of Amylyx's ALS Drug, shows promising results in the Phase II/III Clinical Trials. They will be joined founders of Amylyx, Josh Cohen and Justin Klee. Dr. Merit Cudkowicz is the Director of the Healey Center for ALS, Chief of Neurology at at Mass General Hospital and the Julieanne Dorn Professor of Neurology at HMS. She is dedicated to the study and treatment of people with ALS. As Principal Investigator of the Clinical Coordination Center for the National Institute of Neurological Disorders and Stroke’s Neurology Network of Excellence in Clinical Trials (NeuroNEXT), Dr. Cudkowicz mentors many neurologists in clinical investigation of neurological disorders. She completed her undergraduate degree in chemical engineering at MIT and earned a medical degree at HMS. She completed her neurology residency and fellowship at MGH. Dr. Sabrina Paganoni, MD, PhD is a physician investigator at the Healey Center for ALS at Mass General, Co-Director of the Neurological Research Institute at the Massachusetts General Hospital and Assistant Professor of Physical Medicine and Rehabilitation at Harvard Medical School. Dr. Paganoni obtained her MD degree at the University of Milan in Italy and a PhD in Neuroscience at Northwestern University. She is Board-certified in Physical Medicine and Rehabilitation, Neuromuscular Medicine, and Electrodiagnostic Medicine. She has served as the Principal Investigator of many ALS clinical trials and has been using novel neuroimaging techniques, bio-fluid biomarkers and digital technology as measures of target engagement in these trials. Currently, she is the co-Principal Investigator of the HEALEY ALS Platform Trial.
NurOwn, An Overview of the Stemcell Clinical Trial with Dr. Namita Goyal, MD
Our Guest Speaker, Dr. Namita Goyal, MD., is one of the Principal Investigators in the Stemcell NurOwn Phase 3 trial. Before the trial is unblinded and the top line results are released later this fall, Dr. Goyal will help us understand NurOwn's clinical development & the role of neuroinflammation in ALS. o specializes in neuromuscular diseases at UC Irvine Health, with board certifications in neurology, electrodiagnostic medicine and neuromuscular medicine. Her clinical interests include amyotrophic lateral sclerosis (ALS), muscular dystrophies, muscle disease, myasthenia gravis, and demyelinating neuropathies. She performs a number of diagnostic procedures including adult and pediatric electromyogram (EMG), single-fiber EMG and muscle biopsies. Dr. Goyal completed a residency in neurology at University of Chicago Medical Center, followed by a fellowship in electromyography, clinical neurophysiology and neuromuscular disease at Harvard University’s Massachusetts General Hospital, where she subsequently served as a faculty member. At UC Irvine, Dr. Goyal continues her work in neuromuscular medicine. In addition to evaluating and treating patients, she is a mentor to fellows and residents, serving as fellowship director for the Department of Neurology. She also is an investigator in several clinical trials involving neuromuscular diseases. Find additional information on the clinical trials lead by Dr. Namita Goyal: https://profiles.icts.uci.edu/namita.goyal
A Comprehensive Functional Medicine Approach to ALS with Dr. Shelena Lalji
Our Guest Speaker, Dr. Shelena Lalji, MD., F.A.C.O.G. is founder of the Lalji ALS Foundation and dedicated to providing functional medicine approach to people with ALS. Dr. Shelena Lalji is a board-certified OB/GYN and a functional medicine expert who has been treating patients in the Greater Houston area for more than 20 years. She has spent the last 12 plus years of her professional career treating patients holistically getting to the root cause of their symptoms and diagnoses (www.DrShel.com). As an advocate for her patients, she has spent her time with patient care, educating other practitioners in the functional approach, speaking internationally, appearing on a variety of local and national media and volunteering with many charitable institutions. With the onset of her husband Dr. Ayeez Lalji’s ALS diagnosis in November 2017, she and her family founded the Lalji ALS Foundation (www.ALS Heroes.com). She assembled doctors, experts, research scientists and supporters from all over the world and worked around the clock to learn more about this debilitating disease. Dr. Shel and her family have collaborated with worldwide organizations and researchers to develop protocols to help ALS patients. She even hosted the first ever ALS Mastermind Summit in North America in 2019 where she convened 37 experts in the field of ALS and neurodegenerative diseases with over 400 years of cumulative experience. Through all this extensive research and collaboration, Dr. Shel and her team has compiled what she now calls her Brain Healing Bootcamp for many chronic conditions such as cancer, autoimmune diseases, Lyme disease and neurodegenerative conditions, such as ALS, MS, Parkinson’s, Alzheimers, dementia and even autism. Dr. Shel is committed to finding a cure for ALS and being an advocate for caregivers. She enjoys her many roles as physician, ALS advocate, women’s advocate, entrepreneur, loving wife and devoted mother to her two children, Zoe and Zade.