ROADS to a better ALS outcome measure: the new Rasch-Built Overall ALS Disability Scale (ROADS)
Speaker: Christina Fournier, MD, MSc, Emory University
This webinar will present the rationale for creating a new ALS disability scale, give an overview on the creation and validation of the ROADS, and will discuss advantage of using this new tool for ALS research and clinical practice. Patients with ALS and their caregivers will learn more about how ALS disease progression is measured and why it matters, and clinicians and researchers will be provided with specific details about the ROADS to allow its use in clinical trials and at the bedside.
Date: Thursday, February 20, 2020
Time: 1:00 p.m. EDT
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Research and Support for Young Caregivers and Families Affected by ALS
Speaker: Melinda Kavanaugh, PhD, MSW, LCSW, University of Wisconsin - Milwaukee
Despite the growing body of research on caregivers in ALS, the most vulnerable and isolated population of caregivers, children and youth caregivers, or "young caregivers," remain hidden. Young caregivers, between the ages of 5-19, participate in all aspects of daily care, from feeding and bathing, to toileting and transferring, all in relative isolation. A growing body of international young caregiver research highlights the emotional and social impacts, underscoring gaps in evidence-based programming across countries. A survey of U.S. families in ALS found almost one third of families have a child or youth under age 18 providing care. Recent data suggests sleep disruption and minimal caregiving training is common in young caregivers, increasing anxiety and setting up the potential for long-term health effects in young caregivers. Dr. Kavanaugh will provide a discussion of current research on children and youth caregivers in ALS/MND, including perspectives of the person with ALS, how research has been used to inform evidence-based interventions and supports, and a roadmap for future inclusion of children and youth in caregiving research, programming, and supports.
Date: Monday, March 9, 2020
Time: 1:00 p.m. EDT
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Impact of Respiratory Strength Training on Breathing, Swallowing and Quality of Life in ALS
Speaker: Emily Plowman, Ph.D., CCC-SLP, Associate Professor, University of Florida
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ALS Research Progress – Hope for the Future
Speaker: Lucie Bruijn, Ph.D., MBA, Chief Scientist of The ALS Association
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ALS: Light from SOD1 Protein – Protein Interactions
Speaker: Mel Reichman, Ph.D., Director, LIMR Chemical Genomics Center (LCGC), Senior Investigator, Lankenau Institute for Medical Research (LIMR)
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Expanding mechanisms and therapeutic targets for ALS
Speaker: Aaron Gitler, Ph.D., Associate Professor of Genetics, Stanford University
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Genomic Translation for ALS Care (GTAC study): Envisioning the Precision Medicine Future for ALS
Speaker: Matthew Harms, M.D., Director of GTAC and Assistant Professor of Neurology at Columbia University Medical Center
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Building new UBQLN2 mouse models to better understand ALS
Speaker: Mervyn J. Monteiro, Ph.D., Professor, University of Maryland School of Medicine
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NEK1 Variants Confer Susceptibility to ALS
Speakers: John Landers, Ph.D., University of Massachusetts Medical Center and Dr. Leonard van den Berg, Director Netherlands ALS Center, Utrecht, Netherlands
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Unfolding Misfolded Proteins May Offer New Treatment Approach
Speaker: James Shorter, M.A., Ph.D., Associate Professor, Department of Biochemistry & Biophysics, Perelman School of Medicine, University of Pennsylvania
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Patients’ Needs and Requests with Respect to Assistive Communication Technologies
Speaker: Terry Heiman-Patterson, M.D., Professor and Vice Chair of the Department of Neurology at Drexel University College of Medicine
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Business Plans for ALS Assistive Technologies
Speaker: Bob Koppes, MSc, M.B.A., Accenture Management Consulting
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New Therapeutic Approaches for ALS Based on RNA Binding Proteins
Speakers:
Benjamin Wolozin, M.D., Ph.D., Professor of Pharmacology and Neurology, Boston University School of Medicine, Co-founder Aquinnah Pharmaceuticals
Glenn Larsen, Ph.D., CEO, Aquinnah Pharmaceuticals Inc
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Progress in Therapy Development for C9ort72 ALS/FTD
Speaker: Clotilde Lagier-Tourenne, M.D., Ph.D.
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How can we use predictions of individual ALS patient disease progressions to improve ALS clinical trials?
Speaker: David L. Ennist, PhD, MBA
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Iron Horse Diagnostics : Developing Tests to Aid Rapid ALS Diagnosis and Monitor Disease Progression
Speaker: Dr. Robert Bowser, PhD, President, Iron Horse Diagnostics, Inc., Dr. Andreas Jeromin, PhD, Chief Scientific Officer, Iron Horse Diagnostics, Inc.
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Developing Therapy Based on the Root Cause of ALS
Speaker: Dr. Phillip Wong, Professor of Pathology at Johns Hopkins University School of Medicine
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Epidemiology Studies in ALS
Speaker: Bjorn Oskarsson, M.D., University of California. Davis
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ALS Association Research Update
Speaker: Dr. Lucie Bruijn, Chief Scientist, The ALS Association
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The CReATe Consortium
Speaker: Dr. Michael Benatar, University of Miami Health System
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The Neurocollaborative: Therapy Development for ALS
Speaker: Steven Finkbeiner, M.D., Ph.D., Professor, Departments of Neurology and Physiology, University of California, San Francisco
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The Neurocollaborative: Therapy Development for ALS
Speaker: Don W. Cleveland, Head, Laboratory for Cell Biology, Ludwig Institute for Cancer Research; Distinguished Professor and Chair, Dept. of Cellular and Molecular Medicine, Univ. of California, San Diego
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Imaging Inflammation in the Brain May Speed Development of New Treatments
Speaker: Nazem Atassi, MD, MMSc, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital
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Induced Pluripotent Stem Cells to Model and Treat ALS: A New ALS Association Funded Core Facility at Cedars-Sinai
Speaker: Clive Svendsen, Ph. D., Director, The Board of Governors Regenerative Medicine Institute at Cedars Sinai Medical Center
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A Whole Genome Approach to ALS Genetics at the New York Genome Center
Speaker: Hemali Phatnani, Ph.D., The New York Genome Center
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Research Opportunities as a Result of Ice Bucket Challenge Funds
Speaker: Lucie Bruihn, MBA, PhD
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Exome-Wide Rare Variant Analysis Identifies a Novel Gene Associated with Familial ALS
Speaker: John Landers, Ph.D., Professor, University of Massachusetts Medical School
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An Update on ALS Research
Speaker: Lucie Bruijn, M.B.A., Ph.D., Chief Scientist, The ALS Association
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The role of biomarkers in studying pre-symptomatic ALS
Speaker: Michael Benatar, M.D., Ph.D., Associate Professor of Neurology at the University of Miami
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A Pilot Clinical Trial of mGluR5 Brain PET Imaging in ALS – a potential biomarker to assist in diagnosis and monitoring disease progression
Speaker: Lyle W. Ostrow, M.D., Ph.D., Johns Hopkins School of Medicine
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Canine ALS Model Provides Unique Opportunity for Therapy Testing
Speaker: Joan Coates, D.V.M.
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Telemedicine for ALS
Speaker: Ed Kasarskis, M.D., ALSA Certified Center Director
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An Overview of ALS Research
Speaker: Lucie Bruijn, PhD, Chief Scientist, The ALS Association
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Altered protein quality control: How cells metabolize mutant and damaged proteins, but fail to keep up in ALS
Speaker: Heather D. Durham, PhD, Professor, Department of Neurology and Neurosurgery and Montreal Neurological Institute, McGill University
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Altered Ribostasis: the role of perturbed RNA metabolism in ALS and related diseases
Speaker: Paul Taylor, M.D., Ph.D., St. Jude Children's Research Hospital
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Insights into Motor Neuron Disease from Drosophilia
Speaker: Brian D. McCabe, Ph.D. Assistant Professor, Columbia University, New York, N.Y.
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Staging System for ALS Should Help Clinical Decision-making
Speaker: Ammar Al-Chalabi, M.D.
Professor of Neurology and Complex Disease Genetics, and Director of King’s MND Care and Research Centre at King’s College in London
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C9ORF72 – the role of RNA toxicity in ALS
Speaker: Rita Sattler, Ph.D.
Assistant Professor, Dept. of Neurology, Brain Science Institute
Principal Scientist, NeuroTranslational Drug Discovery Program
Johns Hopkins School of Medicine
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An Overview of ALS Research
Speaker: Dr. Lucie Bruijn
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MusK Agonists as a treatment for ALS
Speaker: Steven Burden, Ph.D., NYU LangoneMedical Center
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Diaphragm Pacing System Will Be Tested in Nationwide Clinical Trial
Speaker: Dr. Kirsten Gruis
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Phase I Stem Cell Trial Leads to Phase II, and a New Immunosuppression Trial
Speaker: Dr. Jonathan Glass
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Telemedicine May Offer ALS Patients Multidisciplinary Care in Their Own Homes
Speaker: Dr. James Berry
During a recent ALS Association research webinar, James Berry, M.D., M.P.H., discussed how telemedicine may soon be used to provide care to those with ALS without leaving their home.
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A Year in Review
Speaker: Lucie Bruijn, Ph.D., The ALS Association
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Progress in Developing Biomarkers for ALS Will Speed Clinical Trials
Speaker: Andreas Jeromin, Ph.D.
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The Role of the Immune System in ALS
Speaker: Howard Weiner, MD, Brigham and Women's Hospital
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Can Vaccination Stop SOD Protein's Toxic Effects?
Speaker: Janice Robertson, Ph.D.
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Discoveries Give New Meaning to "Familial" and "Sporadic" ALS
Speaker: Michael Benatar, M.D.
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C9ORF72: Another Vital Piece of the Molecular Jigsaw Puzzle
Speaker: Dr. Chris Shaw, 2012 Sheila Essey Award recipient
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Stem Cells, Growth Factors and ALS - Separating the Hope from the Hype
Speaker: Clive Svendsen, Ph.D., Director, Cedars-Sinai Regenerative Medicine Institute
View archived webinar at https://alsa.webex.com/alsa/ldr.php?RCID=1a0273b4d34964bc096e456be3eb48ad
TDP-43 Proteinopathies in ALS-Dementia
Speaker: Professor Virginia Lee, Center for Neurodegenerative Disease Research, University of Pennsylvania, Philadelphia, PA
View archived webinar at https://alsa.webex.com/alsa/ldr.php?RCID=82e2a67b0b5206872745098a40076f44
Mechanisms and Therapeutic Approaches for TDP-43 Proteinopathies
Leonard Petrucelli, Ph.D. Chair of Neuroscience
Mayo Clinic, Jacksonville, Florida
View archived webinar at https://alsa.webex.com/alsa/ldr.php?RCID=d46a2f36073ae80aa61a5a1615a7bc2f
Topic: Autophagy as a therapeutic target for ALS
Stephen Finkbeiner, M.D., Ph.D. from the Gladstone Institute, UCSD
View archived webinar at https://alsa.webex.com/alsa/ldr.php?RCID=47c11c81755b572cc30a1090abe799c8
Understanding the Connection:
ALS and Frontotemporal Lobar Dementia
Presented by Catherine Lomen-Hoerth, MD, neurologist and director of the ALS Center at UCSF Medical Center in San Francisco, California.
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For ALS Mouse Models, Maine Lab is the Core Resource
Presented by: Cathleen Lutz, PhD, Jackson Laboratories
In a recent webinar The ALS Association sponsored, Cathleen Lutz, Ph.D., Associate Director of the Genetic Resource Science Repository at Jackson Laboratories, spoke about the Lab’s work to develop, maintain and distribute ALS mice.
View archived webinar at https://alsa.webex.com/alsa/ldr.php?RCID=f572c85acfe3c0b24ee22bfd73f7a6ab
Research Update Webinar on the ALS Mouse Repository at Jackson Laboratories
Rosa Rademakers, PhD. and Bryan Traynor, MD.
A newly-discovered mutation is the most common known genetic cause of familial ALS and also accounts for some sporadic ALS cases. Researchers now have new clues about ALS and familial frontotemporal dementia (FTD). Hear Rosa Rademakers, PhD, and Bryan Traynor, MD discuss the implications of the new research.
Rosa Rademakers is with the Department of Neuroscience at the Mayo Clinic in Jacksonville, Florida. Her research is centered around the molecular genetic analyses of neurodegenerative diseases with a main focus on frontotemporal dementia (FTD) and ALS.
Bryan Traynor is Chief of the Neuromuscular Diseases Research Group in the Laboratory of Neurogenetics at the National Institutes of Health (NIA) and an adjunct faculty member of the Neurology Department, Johns Hopkins.
View archived webinar at https://alsa.webex.com/alsa/ldr.php?RCID=d5cf52113c46da44164e7cd9571dc23e
Dr. Teepu Siddique
Professor of Neurology, Northwestern University.
Dr. Siddique was the senior researcher for the new gene linked to familial ALS involved in the processing of accumulated proteins, Ubiquillin-2. He has dedicated most of his career to neurological disorders such as ALS. Dr. Siddique will be speaking of the discovery of the Ubiquillin-2 and its impact on the future of ALS research.
View archived webinar at https://alsa.webex.com/alsa/ldr.php?RCID=50c171f2719a0110bc12a1f2138b0ec1
TREAT ALS/NEALS Clinical Network
Dr. Merit Cudkowicz
Professor of Neurology, Harvard Medical School
Dr. Cudkowicz chairs the Northeast ALS Consortium (NEALS) where they are dedicated to developing and implementing clinical trials and other research studies focused on the understanding of ALS and improving the care of those living with the disease.
View archived webinar at https://alsa.webex.com/alsa/ldr.php?RCID=4b167047796403a0144aeafaeec1297b
Exercise Clinical Trial for ALS
Nicholas Maragakis, M.D.
Johns Hopkins School of Medicine, Baltimore, MD
Despite decades of discussion over the potential benefit or harm of exercise in ALS, no study has compared these two forms of exercise, resistance and endurance, with the current standards of ALS care—stretching and range of motion exercise. The ALS Association is funding Dr’s Nicholas Maragakis and Merit Cudkowicz to address these questions in a randomized, controlled study with the long term goal of establishing a larger efficacy study and eventually a consensus statement on the potential benefits (or detriments) of exercise in this neurodegenerative disease.
View archived webinar at https://alsa.webex.com/alsa/ldr.php?RCID=5785dfba8ecfb75a70949b6f876a9691
Understanding the relationships between gene variations and patterns of ALS. The ALSoD database.
Ammar Al-Chalabi, MD
MRC Center for Neurodegenerative research
Insititute of Psychiatry
London, UK
Keeping up with the rapidly changing field of ALS genetics is difficult. New genes thought to cause ALS with varying levels of scientific support are reported almost every month, and even for those that are widely regarded as being true ALS genes, the exact variations within them and how they relate to disease may be difficult to understand. One way to overcome this problem is by collecting all the scientific reports and unpublished genetic information in one place, combining information about the clinical picture with genetics to see if new patterns emerge. The ALS Online Database (ALSoD) found at http://alsod.iop.kcl.ac.uk currently records information on 74 possible ALS genes with tools for analysis and summaries of the relationships between those genes and patterns of ALS.
View archived webinar at https://alsa.webex.com/alsa/ldr.php?RCID=210f88405fbb6e88f7abbe7227353ba2
Related Documents:
Summary: Online Database of ALS Genes
Keeping Up with Genetic Discoveries in ALS
The role of TDP43 in ALS
Tom Maniatis, Ph.D.
Columbia Medical School, New York, NY
Identification of mutations in TDP43 linked to familial ALS has opened up new avenues for research. Using novel technologies, Dr. Maniatis’s laboratory is attempting to understand how TDP43 causes ALS, enabling the identification of new approaches to treat ALS.
Electrical Impedance Myography as a Biomarker for ALS
Dr. Seward Rutkove
Beth Israel Deaconess Medical Center
Dr. Seward Rutkove’s biomarker, a method called electrical impedance myography (EIM), sensitively measures the flow of a tiny, painless, electrical current through muscle tissue. As the disease progresses, ALS patients’ muscles atrophy, and the more their muscles weaken and shrink, the greater the change detected as the current moves through the muscle. By comparing the size and speed of the electrical current as it passes through healthy and diseased tissue, EIM can accurately measure the progression of the disease.
View archived webinar at https://alsa.webex.com/alsa/ldr.php?AT=pb&SP=MC&rID=62567427&rKey=4e32152d4abb5a59
Exome sequencing and identification of mutations in VCP linked to familial ALS
Bryan Traynor, M.D.
National Institute of Aging, Bethesda, MD
Exome sequencing is a new technique, which allows researchers to rapidly sequence the 1% of the human genome that codes proteins; this is where 85% of the mutations causing familial ALS lies. Using this technology, Dr. Traynor identified a new gene, valosin-containing protein (VCP), which is linked to familial ALS.
View summary of this webinar at http://www.alsa.org/news/archive/whole-exome-sequencing.html
Using Induced Pluripotent Stem Cells to Identify New Treatments for ALS
Ashkan Javaherian, Ph.D.
iPierian, San Francisco, CA
Adult skin cells can be manipulated to generate induced pluripotent stem cells to produce motor neurons and astrocytes, cells at risk in ALS. The ALS Association has awarded a one-year grant to iPierian to support the identification of a “cellular phenotype,” which represents differences in motor neurons or astroglial cells derived from ALS patients, versus healthy controls. This phenotype would be the basis for drug screening to identify potential disease-modifying drug candidates for ALS.