BrainGate ALS Trial - Information Session
BrainGate ALS Trial is ongoing and we are bringing this pre-recorded session for you so you know all about the trial before the webinar on June 16th 2021, so you can com prepared with questions In this interview you will learn about the Brain Gate technology, and important trail details such as inclusion and exclusion criterias, required travel / home visits etc. Dr. Leigh R. Hochberg is a Neurologist at MGH and directs Center for Neurotechnology and Neurorecovery at MGH. He is joined by Dr. Daniel Ruben, Neurologist of MGH and one of the investigators for the BrainGate Clinical Trial. Leigh R. Hochberg, MD, PhD is Professor of Engineering, School of Engineering and Carney Institute for Brain Science, Brown University; Director, VA RR&D Center for Neurorestoration and Neurotechnology (CfNN), Providence VAMC; Neurologist at Massachusetts General Hospital, where he attends in the NeuroICU and on the Acute Stroke service; and Senior Lecturer on Neurology at Harvard Medical School. He also directs the Center for Neurotechnology and Neurorecovery at MGH, and is the IDE Sponsor-Investigator and Principal Investigator of the BrainGate clinical trials, conducted by a close collaboration of scientists and clinicians at Brown, Case Western Reserve, MGH, Providence VAMC, and Stanford. Dr. Hochberg’s research focuses on the development and testing of novel neurotechnologies to help people with paralysis and other neurologic disorders. Dr. Hochberg and his research with the collaborative BrainGate team have been honored with the Joseph Martin Prize in Basic Research, the Herbert Pardes Prize for Excellence in Clinical Research, the first Israel Brain Technologies international B.R.A.I.N. Prize, presented by President Shimon Peres, and the Derek Denny-Brown Young Neurological Scholar Award. Dr. Hochberg’s BrainGate research, which has been published Nature, Lancet, Science Translational Medicine, eLife, Nature Medicine, Nature Neuroscience, the Journal of Neuroscience, the Journal of Neural Engineering, and others, is supported by the Rehabilitation R&D Service of the U.S. Department of Veterans Affairs, the NIH BRAIN Initiative/NINDS, NIDCD, and philanthropies including the ALS Association, the Movement Disorder Foundation and the Cerebral Palsy Alliance Research Foundation. Dr. Daniel Ruben, MD, is Neurologist of MGH and one of the investigators for the BrainGate Clinical Trial. He has a scientific background in computational neuroscience and completed his clinical training in neurology and neurocritical care at Massachusetts General Hospital and Brigham and Women’s Hospital in Boston, MA
Speed up ALS drug discovery by using innovative technology, Digital Biomarkers, by Dr. James Berry
Dr.James Berry presents an insightful seminar on how Technology can hasten ALS Drug Discovery by using Digital Biomarkers in ALS. Dr. Berry is working to identify biomarkers to improve clinical trial methodology. His goal is to speed up the process of identifying the next drug that will slow, reverse or even prevent ALS in the future. We also unveiled Digital Biomaker study with Bing search engine data with Mirosoft Research. Questions Addressed in this video --------------------------------------------------- 1. For people farther advanced are they able to participate in digital biomarker studies as well? Are eye gaze/voice control users out of these studies? 2. Could you please explain how digital biomarkers may change the diagnostic process for ALS? 3. Any initial impressions where the FDA stands on digital biomarkers? Are any of these being used in early clinical trials? 4. Is it possible to be in multiple digital biomarker trials at the same time? --------------------------------------------------- Dr. James Berry, is Director of MGH Neurological Clinical Reserach Institute and Chief of the Division of ALS and Motor Neuron Diseases. Dr. Berry provides care for people with amyotrophic lateral sclerosis (ALS). He is the Winthrop Family Scholar in ALS Sciences, the Director of the Massachusetts General Hospital (MGH) multidisciplinary ALS clinic and Chief of the Division of ALS and Motor Neuron Diseases. He has worked to better serve people with ALS by building the tools and team required to extend the reach of the MGH clinic team beyond the walls of the physical clinic. The ALS House Call program and video televisit program are examples of exciting initiatives at the MGH ALS clinic. Dr. Berry works as an ALS researcher, designing, overseeing, and carrying out trials at MGH and centers across the country. His work is focused on the identification of markers of ALS in blood and spinal fluid, with an emphasis on markers of abnormal inflammation. He collaborates broadly with researchers around the globe on these biomarker efforts. He is also actively working to develop mobile health and digital phenotyping methods to better understand ALS and hasten the development of new therapies, while reducing the burden of trial participation for people with ALS. Dr. Berry is also the Director of the MGH Neurological Clinical Research Institute (NCRI) and Director of the Mass General Brigham Neurodegenerative Clinical Research Fellowship. He is a member of the Massachusetts ALS Registry team and CDC/ATSDR National ALS Registry and Biorepository Expert Panels. In addition, he is on the Executive Committee of the NEALS Consortium, a national organization for ALS clinical researchers, where he also leads the NEALS Biorepository and Technology in ALS subcommittee.
Assistive Technology for Communication, A Spectrum of Options by Team Gleason
Checkout everythingals.org/research for speech study on biomarkers and get feedback on your speech and also voice bank at the same time. https://www.everythingals.org/post/everythingals-selected-to-present-at-the-american-academy-of-neurology-annual-meeting-april-17-22 Join Speech and Language Specialists, Emily Kornman and Lisa Bardach, for a webinar on Assistive Technology for Communication. Emily joined Team Gleason after obtaining experience as a Speech-Language Pathologist in an ALS multidisciplinary clinic, and neurorehabilitation outpatient clinic. Her value among the team is immeasurable and brings a critical depth of knowledge to help Team Gleason meet its goals of assisting more people living with ALS. In her time at Team Gleason, Emily has said, “It feels unreal to be able to help the amount of people each day in the way that we do." This was a big change from working in a clinic where you have a certain amount of time to work with each patient and have to see so many per day, to being able to actually listen and assist each person no matter the time or insurance. Questions and Comments Addressed: 1. I have progressive dysarthria, but do not have a local speech therapist or pathologist. Should I find one? 2. I had a proxy bank her voice for me. So, can I add my old phone messages from my voice now to include? 3. I have a Tobii Dynavox. Q: Do you have a recommendation for a good amplifier. I have one that has a lot of feedback. 4. I have a Tobii and thanks to Team Gleason, I was able to get Acapella and bank my son's voice. My question is how to import the Acapella bank to the Tobii program? I've contacted Tobii and hit a brick wall. 5. I have Tobii I-15+ with Windows Control and Nextup Talker to speak 6. I have proloQuo2go 7. Will you be mentioning brain communication options like Nuos? 8. Please advise best Assistive device to work with multiple screens. 9. my eye gaze works good 10. I can still talk but Im quickly losing the use of my arms and hands can I still get a eye gaze to control my powerwheelchair? 11. I cannot use multi focus glasses with eyegaze 12. Francois Gand - NURO CEO: You may be able to use NUOS, our brain-based technology to bypass the limitations from eye gaze. Please visit www.nuro.ca for more information. 13. My speech therapist requested Tobii Dynavox when I lost my hands usage 14. How can voice banking and voice messaging integrate into voice blending? Can this all be done on a smartphone? 15. Is there a single app that does it all? 16. Any way to use binoculars without hands? 17. pls talk about TTY phone calls. thx 18. Do you know if there is any comuniacation software in spanish to use with a eyegazer or mousse 19. Emily Kornman: https://g3ict.org/events/neuroabilities-webinar-neurotechnologies-for-expressive-communication-current-and-future-considerations 20. Will the pamphlets (comparing the devices that you mentioned), be emailed to all of us participants automatically? 21. Looking for best option for a mobile device or app that can have sophisticated message banking. Is there anything better than text to talk apps right now? 22. obii's Windows Control in my opinion is the best program to control your eye gaze device 23. Francois Gand - NURO - NUOS: NUOS is available today commercially in Canada and under special FDA clearance in the US. The platform uses the wireless non-invasive monitoring of — internal— Eyeball Movement (no external camera), 3D head tracking as well as Brain Activity. The technology is a seamless combination of custom hardware for advanced EEG and EOG with integrated custom software for 2-bit to 12-bit communication, custom algorithms and a foundation for AI / Machine Learning to help with Neurodegeneration. Acknoledgments: Thanks to Team Gleason for this amazing work Thank you for this excellent, informative presentation. Yes! This was excellent. Thank you Emily and Lisa! Thank you to everyone! Very informative Thank you so very much for this session. It was very helpful to myself and my husband. We were very well educated in the use of different devices.
Caregiver Support Seminar hosted by Hope Foundation and EverythingALS
Join Mental Health Specialist, Mary Holt-Paolone, and Caregiver, Marie Bishop, for a caregiver support seminar. This seminar is open to all caregivers and will discuss ways to create resource lists, ways to ask your doctor and clinic team for specific help; and ways to develop coping skills during difficult times.
NU-9 and the Importance of Upper Motor Neuron Health in ALS
Visit everythingals.org/research and consider joining ALS research. Our speaker Dr. Ozdinler, Associate Professor of Neurology at Northwestern University will discuss the NU-9 and the importance of Upper Motor Neuron Health in ALS. Dr. Ozdinler is an Associate Professor of Neurology at Northwestern University, Feinberg School of Medicine. She is also a faculty member at the Les Turner ALS Center, the Mesulam Cognitive Neurology and Alzheimer's Disease Center and the Robert H. Lurie Comprehensive Cancer Center. The Ozdinler Lab is interested in understanding the molecular and cellular basis of neuronal vulnerability that is observed in distinct neuron populations in different diseases. We focus our attention to the upper motor neurons that die in ALS, HSP and PLS. However, the lab has a broad interest in the common cellular mechanisms that lead to neuronal degeneration. They have generated and characterized the first reporter line for upper motor neurons and developed a novel drug discovery/verification platform that incorporates improved upper motor neuron health as a readout. Interestingly, even for the diseases that have been characterized by the loss of upper motor neurons, their health has never been considered for any of the preclinical assays. In addition to being a scientist, P. Hande is a painter, a writer, an international press member, a mother and an advocate for women, science and education. She invented a new form of painting, the OzdinART, received TradeMark for it as it allows 3D painting on Canvas with less than 1 micrometer resolution of colors, where colors retain their identity without blending in, but mixing together to generate a motion of connectedness. P. Hande's husband Derya Ozyurt and P. Hande started Art Loves Science Foundation, a non-profit which aims to promote science education for students and to initiate funding for the very early stages of innovative and collaborative ideas.
Breathing is Everything
Our speaker, Randy Fishman and Dr. John Hansen-Flaschen, MD from University of Pennsylvania will discuss Respiratory care for people with ALS. Randy L. Fishman is a founder and key advisor to both the Jay S. Fishman ALS Augmentative Communication Program at Boston Children’s Hospital and the Home Assisted Ventilation Program at the University of Pennsylvania. She is co-founder and member of the Advisory Board of Answer ALS and a member of the Executive Committee of ALS Finding a Cure. In these roles, she continues the work that she and her late husband Jay S. Fishman, began in support of ALS research projects and patient care programs for the ALS community. She also serves on the Board of Citymeals on Wheels and New York City Ballet. Mrs. Fishman holds a B.S. in Physical Therapy from Washington University in St. Louis. John Hansen-Flaschen is the Paul F. Harron Jr. Family Emeritus Professor of Medicine at the University of Pennsylvania. He served from 1990 through 2014 as the Chief of the Pulmonary, Allergy and Critical Care Division at Penn. As Division Chief, Dr. Hansen-Flaschen founded the multidisciplinary Paul Harron Lung at Penn with the benefit of a major gift from family members of one of his patients. From 2013 to 2017, Dr. Hansen-Flaschen served as the founding Editor of the international medical journal, the Annals of the American Thoracic Society. In March 2017, Dr. Hansen-Flaschen founded the Jay and Randy Fishman Program for Home Assisted Ventilation within the Harron Lung Center at Penn. This endowed program serves adults who require long-term mechanically assisted ventilation for chronic hypoventilation. Application of the latest technology for respiratory support enables people who are disabled by chronic nerve or muscle diseases such as and amyotrophic lateral sclerosis and muscular dystrophy to live at home and engage in their communities. Dr. Hansen-Flaschen is a career medical educator focusing on medical ethics and humanism. His scholarly interests have focused on reducing the burden of advanced lung disease and critical medical illnesses for patients and family members. His many honors include the Praxis Award in Professional Ethics from Villanova University, the Leonard P Lang Award of the American Lung Association, and the Career Achievement Award of the American Thoracic Society.