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Research Webinars

Upcoming Webinars

Extending breathing and airway protection – Clinical Trial of Respiratory Strength Training in ALS

Speaker: Emily Plowman, Ph.D., CCC-SLP, Associate Professor, University of Florida

Date: Tuesday, February 28, 2017
Time: 4:00 p.m. EST
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The ALS Association/Northeast ALS Consortium PALS Webinars

A User's Guide to Genetic Testing in ALS

Speaker: Jennifer Roggenbuck, MS, LGC, The Ohio State Wexner Medical Center

Genetic Counselor and Assistant Professor at The Ohio State University Medical Center, Jennifer Roggenbuck, will discuss genetic testing options in ALS. She will review our current understanding of ALS genetics, and outline points to consider when weighing the decision to seek testing. Issues related to cost, insurance, interpretation of results, and implications for family members will be discussed.

Date: Friday, January 20, 2017
Time: 2:00 p.m. EST
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Actemra Study – Anti-inflammatory treatment for ALS

Speaker: Shafeeq S. Ladha, M.D., Barrow Neurological Institute

Dr. Shafeeq Ladha from Barrow Neurological Institute will review a clinical trial of Actemra in ALS patients. The rationale for using the drug and the role of inflammation in ALS progression will be discussed.

Date: Thursday, February 9, 2017
Time: 3:00 p.m. EDT
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Cannabinoid use in ALS: Only symptom management or more?

Speakers: Mark Ware, BA, MBBS, MRCP(UK), MSc & Angela Genge, MD, FRCP (c), Montreal Neurological Institute and Hospital

Please join us on March 23rd for a webinar discussion on cannabinoid use in ALS led by Drs. Mark Ware and Angela Genge from the Montreal Neurological Institute and Hospital. Dr. Ware will discuss the mechanism of action of cannabinoids, while Dr. Genge will discuss their use in symptom management, and possible effect on disease course.

Date: Thursday, March 23, 2017
Time: 3:00 p.m. EDT
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Past Webinars:

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 Reserach 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 Langone Medical 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.
View summary and recording of this webinar

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 summary of this webinar

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

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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

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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

View summary of this webinar

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

View summary of this webinar

Research Update Webinar on the ALS Mouse Repository at Jackson Laboratories

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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

View Summary of this Webinar

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

View Summary of this Webinar

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

View Summary of this Webinar

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.

View Summary of this Webinar

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.

View summary of this webinar

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