Compassionate Care ALS (CCALS)
Compassionate Care ALS (CCALS) Compassionate Care ALS (CCALS), a nonprofit located in Falmouth, Massachusetts, currently works with more than 1,050 ALS families in 47 states and multiple foreign countries. Funding from ALSFAC WE CARE will allow CCALS to grow its staff to serve more ALS patients their families, communities, and healthcare providers. We will provide resources including equipment, educational opportunities, Medicare/Medicaid assistance, communication assistance, guidance and awareness with [...]
ALS Ride for Life: Mobility Matters Program
ALS Ride for Life: Mobility Matters Program As a patient-driven, primarily volunteer organization, the mission of ALS Ride For Life is to serve the ALS community by assisting patients and their families through a variety of supportive services to ease the financial and emotional stress this disease places on families, raising research funds to find a cure, raising public awareness, and providing the community with the latest ALS [...]
ALS Finding a Cure Request for Proposals
ALS Finding a Cure Request for Proposals To Develop and Validate ALS Organoid Models Overview: Organoids are a powerful new and compelling technology for studying disease biology. Several different and complementary organoid models currently exist with relevance to ALS, but none of these models has been tested across multiple ALS iPSC lines, and all have been created using different lines/genetic backgrounds making comparisons between/among them challenging. The reagents [...]
ALS Finding a Cure and The ALS Association Partner to Reduce Time to Initial ALS Diagnosis
ALS Finding a Cure and The ALS Association Partner to Reduce Time to Initial ALS Diagnosis Organizations Commit $2M towards New International ALS Diagnostics Effort Boston, MA., Washington, D.C., and Palm Beach, FL (August 16, 2023) — ALS Finding a Cure® (ALSFAC) and The ALS Association have awarded seven new grants worth a total of $2 million to support the development of early diagnostics for ALS. More than [...]
Bridging Voice
Bridging Voice Bridging Voice is a non-profit that provides communication technology support to people with ALS at all stages. To date our team has supported over 1,500 pALS in 49 states and 12 countries. We strive to provide innovative solutions, continued communication, improved quality of life, and hope to the larger ALS community. Funding from ALSFAC will enable Bridging Voice to expand programs that give people with ALS [...]
Matt’s Place Foundation
Matt’s Place Foundation Matt’s Place Foundation: “ Hope & Housing ALS Renovation Series” Matt’s Place Foundation(MPF) is a 501(c)(3) charitable organization run 100% by volunteers to assist pALS (People with ALS) and their families, as they navigate learning to live with this disease. Its ultimate intention is to provide hope, housing, and assistance to families dealing with ALS. MPF helps families diagnosed with Amyotrophic Lateral Sclerosis (ALS) by [...]
ALS Ride For Life
ALS Ride For Life ALS Ride For Life (ALSRFL) is a non-profit located in Stony Brook, New York. ALSRFL was founded 26 years ago by Chris Pendergast. When Chris was diagnosed with ALS he decided he wanted to be part of the solution and ALSRFL was founded. Chris quickly realized patients needed a wheel-chair accessible van to get to much needed doctor appointments and to attend family events. [...]
Team Gleason Mobility for All
Mobility for All Team Gleason has provided over $20 Million in adventure, technology, equipment, and care services to over 30,000 people living with Amyotrophic Lateral Sclerosis (ALS) and countless others through advocacy, support, and, ultimately, bringing an end to the disease. Team Gleason, through its diverse and broad-reaching programming, brings assistive technology, equipment, and robust support services into the hands of ALS patients – with a goal of helping people with ALS [...]
ALSFAC We Care 2021 Grants
ALSFAC We Care 2021 Grants Click below to learn about our inaugural award recipients: Hark-ALS A Nationwide Network of Compassionate and Financial Resources for Families Living with ALS. Read More Compassionate Care ALS Sustainable Growth for ALS Care in the United States. Read More Massachusetts General Hospital Expanding the ALS Parenting At a Challenging Time (ALS PACT) [...]
ALS Finding a Cure Call for Proposals in Early Diagnostics
ALS Finding a Cure Call for Proposals in Early Diagnostics Shockingly, more than 150 years after the disease was first defined, there are currently no universally accepted diagnostic approaches for ALS. In order to receive an ALS diagnosis patients must first undergo a battery of tests designed to rule out other diagnoses. This is highly problematic because it can take a year for an ALS patient to receive the [...]
ALS Finding a Cure Providing the Initial Funding for Amylyx
ALS Finding a Cure Providing the Initial Funding for Amylyx In every journey of discovery, certain days distinguish themselves as fundamental to achieving the ultimate objective. Yesterday was one of those days in the fight against ALS, Lou Gehrig’s Disease, with the FDA’s approval of Amylyx’s new drug, Relyvrio, the first new ALS drug in over five years. ALS (amyotrophic lateral sclerosis) is a devastating disease of the [...]
Publications related to Answer ALS, a project ALS FAC helped fund
Publications related to Answer ALS, a project ALS FAC helped fund 1. Baxi, E. G. et al. Answer ALS, a large-scale resource for sporadic and familial ALS combining clinical and multi-omics data from induced pluripotent cell lines. Nat Neurosci 1-12 (2022) doi:10.1038/s41593-021-01006-0. 2. Zhang, S. et al. Genome-wide identification of the genetic basis of amyotrophic lateral sclerosis. Neuron (2022) doi:10.1016/j.neuron.2021.12.019. 3. Gilley, J. et al. Enrichment of SARM1 alleles encoding variants with constitutively hyperactive NADase in patients [...]
Independent FDA Advisory Panel Recommends Approving ALS Drug
A panel of independent advisers to the US Food and Drug Administration voted Wednesday (September 7) to recommend the agency approve a novel therapy to treat amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s disease. The drug, called AMX0035, had previously been rejected by the same group earlier in the year, but new evidence presented by the company that developed it, Massachusetts-based Amylyx Pharmaceuticals, prompted a surprising reversal that also comes amid [...]
Healey & AMG Center, ALS Finding a Cure® and FightMND announce the 2022 ALS Scholars in Therapeutics Recipients
Class of 2022 Boston—The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital (MGH), ALS Finding a Cure® and FightMND selected three recipients for their global two-year ALS Scholars in Therapeutics program. The program received an outstanding pool of global applications from 4 countries. This year’s selected recipients listed alphabetically are Dylan Galloway, PhD of the Washington University School of Medicine, Jacob Mann, PhD of Northwestern University Feinberg School [...]
AI Finds Potential Drug Targets for Amyotrophic Lateral Sclerosis
Scientists have identified several potential therapeutic targets for amyotrophic lateral sclerosis (ALS) using an artificial intelligence (AI)-powered target discovery engine to analyze dysregulated gene expression in large, publicly available ALS datasets.
ALS Finding a Cure® funded Amylyx’s preclinical and early clinical work
Health Canada decision signifies the first global regulatory approval for Amylyx and the first new therapy for ALS approved in Canada since 2018 ALBRIOZA (also known as AMX0035) is an oral fixed-dose combination therapy that may reduce neuronal cell death as a stand-alone therapy or when added to existing treatments In a clinical trial, ALBRIOZA significantly slowed disease progression and loss of functional decline in people living with ALS Detailed [...]
ALS Finding a Cure® funded the SOD1 1/2 life work used in the Tofersen study
Twelve-month data show that earlier initiation of tofersen slowed decline across measures of clinical and respiratory function, strength and quality of life Tofersen also led to robust and sustained reductions in neurofilament, a marker of neurodegeneration SOD1-ALS is a rare, progressive and fatal genetic form of the disease leading to loss of everyday functions and affecting approximately 2% of people with ALS
ALS Finding a Cure® funded Eledon’s early clinical work for Tegoprubart when the drug was still with ALS TDI
IRVINE, Calif., May 31, 2022 (GLOBE NEWSWIRE) -- Eledon Pharmaceuticals, Inc. (“Eledon”) (Nasdaq: ELDN), a patient-focused clinical stage biopharmaceutical company committed to the development of innovative and impactful treatments for organ and cell transplantation, autoimmune conditions, and neurodegenerative disease, today announced topline results from a Phase 2a clinical trial of tegoprubart (formerly AT-1501) in patients with amyotrophic lateral sclerosis (ALS).1
ALS Association Supports Study of SARM1 Variants
The ALS Association, in collaboration with ALS Finding a Cure, recently awarded $400,000 to support research into the role SARM1 gene mutations play in the development and progression of ALS, with the ultimate goal of using an improved understanding of SARM1 to develop new treatments. The research will be led by Dr. Jemeen Sreedharan at King’s College London and Dr. Michael Coleman at Cambridge University.
ALS Finding a Cure® and the ALS Association recent funding of four new grants
Arrest ALS In collaboration with the ALS Association, we are pleased to announce the recent funding of four new grants designed to elucidate the biological linkages between key drivers of active axonal degeneration and ALS. ALS Finding a Cure® and the ALS Association are pleased to further scientific advances in this important area of research, which are sure to lead to future therapeutic insights. The four projects funded [...]
ALS Scholars in Therapeutics: Request for Applicants
ALS Scholars in Therapeutics: Request for Applicants Please forward the announcement below to your network of clinical and basic researchers. Due date for nominations is April 29, 2022 The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital (MGH) in partnership with ALS Finding a Cure® (ALSFAC) and FightMND is issuing a request for applications for the ALS Scholars in Therapeutics Program to empower young investigators to learn how to [...]
Motor neuron toxin associated with ALS identified by UMass Chan investigators
Motor neuron toxin associated with ALS identified by UMass Chan investigators An international team of investigators has discovered that an inorganic polyphosphate released by nerve cells known as astrocytes in people with amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) contributes to the motor neuron death that is the signature of these diseases. The research, by Brigitte van Zundert, PhD, adjunct professor of neurology at UMass Chan and [...]
Penn Medicine: Respiratory Care for ALS: The North American ALSFAC We Care Online Cource for Clinicians
Penn Medicine: Respiratory Care for ALS: The North American ALSFAC We Care Online Cource for Clinicians Until the recent past, virtually everyone with amyotrophic lateral sclerosis (ALS) lost their breath as the paralyzing disease progressed. Most have died after 2 to 5 years of respiratory failure. However, extraordinary recent advances in respiratory care now enable many people with ALS to breathe comfortably and securely with the assistance [...]
Hark-ALS: A Nationwide Network of Compassionate and Financial Resources for Families Living with ALS
Hark-ALS: A Nationwide Network of Compassionate and Financial Resources for Families Living with ALS In 2009 I watched my dad slowly lose his ability to walk, talk, swallow and breathe before taking his last breath 18 months after being diagnosed with ALS (Lou Gehrig’s Disease). I’m one of 7 children and my dad was a veteran so we had all we needed to take care of him [...]
Compassionate Care ALS: Sustainable Growth for ALS Care in the United States
Compassionate Care ALS: Sustainable Growth for ALS Care in the United States Compassionate Care ALS (CCALS), a nonprofit located in Falmouth, Massachusetts, currently works with more than 860 ALS families in 42 states and multiple foreign countries. Funding from ALSFAC WE CARE will allow CCALS to grow its staff to serve more ALS patients their families, communities, and healthcare providers. We will provide resources including equipment, educational opportunities, Medicare/Medicaid assistance, communication assistance, guidance [...]
Massachusetts General Hospital: Expanding the ALS Parenting at a Challenging Time (ALS PACT) Program with Web-based Resources for Parents and Providers
Massachusetts General Hospital: Expanding the ALS Parenting at a Challenging Time (ALS PACT) Program with Web-based Resources for Parents and Providers Many people coping with ALS live with, or care for, children or grandchildren. When confronted with a disease as difficult to navigate as ALS, many parents understandably struggle with knowing how best to support their children (or grandchildren) and accessing resources tailored to their needs. The [...]
Denis Rizzuto
Denis Rizzuto Denis Rizzuto graduated from the University of Bridgeport with a degree in Business Administration. He served as Director of Private Label Sales at Zotos for several years before joining his father at Conair, where he was Senior Vice President of Liquid Sales and Operations. In 2011, Denis was named to the Conair Board of Directors. As the third generation of Rizzutos to hold a [...]
Clive Svendsen
Clive Svendsen, PhD Clive Svendsen, PhD did his pre doctoral training at Harvard University and received his PhD from the University of Cambridge in England where he then established a stem cell research group before moving to the University of Wisconsin in 2000 to became Professor of Neurology and Anatomy, Director of an NIH funded Stem Cell Training Program and Co-Director of the University of Wisconsin [...]
Edward (ED) J. Rapp
Edward (ED) J. Rapp Ed Rapp retired from Caterpillar Inc. in July 2016. Prior to his retirement, Ed was a Caterpillar Inc. Group President. During his time in the Caterpillar Executive Office, he led Resource industries and Construction Industries and was the company's CFO. Rapp has more than thirty-seven years of global experience and has lived and worked in the United States, Africa, Europe, and Asia. [...]
Luca Marinelli
Luca Marinelli, PhD Luca Marinelli, PhD is Senior Principal Scientist in the Biology and Applied Physics organization at GE Research. He has held individual contributor and managerial roles at GE Research for the past 16 years, leading projects spanning multiple modalities in medical imaging, primarily in MRI. His research interests span quantitative MRI, fast MR imaging and advanced algorithms for accelerated image acquisition and reconstruction, including [...]
Tom Gentile
Tom Gentile Tom Gentile was named president and chief executive officer of Spirit AeroSystems in August 2016. Spirit AeroSystems is an $8 billion global leader in the manufacture of structures for commercial and military aircraft. Prior to Spirit, he served as President and Chief Operating Officer of GE Capital. Before this role, Gentile was president and CEO of GE Healthcare Systems, a $14 billion diagnostic imaging [...]
Peter Foss
Peter Foss Interview Peter Foss retired from GE in March of 2013, after completing a 36-year career. He returned to GE in November of 2013, joining the GE Healthcare team to be responsible for the GE/NFL brain research effort, which he was instrumental in starting before his retirement. During Foss's career at GE he held many positions, the last of which was President, Olympic Sponsorship and [...]
Randy Fishman
Randy Fishman Randy Fishman is a member of the Board of Directors of Citymeals on Wheels, and New York City Ballet. Mrs. Fishman also devotes much of her time to continuing 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 is co-founder and member of the Advisory Board [...]
Richard G. Ellenbogen
Richard G. Ellenbogen, MD, F.A.C.S Richard G. Ellenbogen, MD, F.A.C.S is the Chair and the Theodore Roberts Endowed Professor of the Department of Neurological Surgery at the University of Washington in Seattle, WA. In addition, he is Director of the Neurological Surgery Residency Program and Director of the UW Medicine Neurosciences Institute. His numerous clinical interests include pediatric and adult brain tumors, trauma surgery, congenital malformations, [...]
Merit Cudkowicz
Merit Cudkowicz, MD, MSc Interview Merit Cudkowicz, MD, MSc is the Chief of the Massachusetts General Hospital Neurology Service, Director, Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital, and the Julieanne Dorn Professor of Neurology at Harvard Medical School in Boston. Dr. Cudkowicz is co-founder and former director of the Neurological Clinical Research Institute (NCRI). She is one of the founders and [...]
Robert Brown D.Phil
Robert H. Brown Jr., MD, DPhil Robert H. Brown Jr., MD, DPhil is the director of the Program in Neurotherapeutics at the University of Massachusetts Medical School. Dr. Brown is an internationally known researcher and clinician leading the quest to cure neurodegenerative and neuromuscular diseases like amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Dr. Brown founded the Day Neuromuscular Laboratory in 1984 to [...]
Stanley H. Appel
Stanley H. Appel, MD Interview Stanley H. Appel, MD is the Peggy and Gary Edwards Distinguished Endowed Chair for ALS Research, Chair of the Stanley H. Appel Department of Neurology and Co-Director of the Houston Methodist Neurological Institute. He also serves as Director of the MDA/ALSA ALS Research Clinical Center at Houston Methodist Hospital, and is Professor of Neurology at Weill Cornell Medical College. In August [...]
Leandro P. Rizzuto
Leandro P. Rizzuto Lee Rizzuto grew up in Brooklyn, New York, son of Italian immigrants, both active members of the large and bustling New York City hair salon community. He attended Brooklyn Tech and graduated in 1956. In 1959, Lee and his parents invested $100 to launch Continental Hair Products. The company quickly grew into a trusted source of innovative and affordable products for professional stylists, [...]
Cedars-Sinai receives $11.99 million from CIRM to launch ALS clinical trial
Cedars-Sinai receives $11.99 million from CIRM to launch ALS clinical trial Cedars-Sinai has been awarded $11.99 million by California's stem cell agency to launch a clinical trial testing a potential gene and stem cell therapy for amyotrophic lateral sclerosis (ALS). ALS, or Lou Gehrig's disease, is a progressive neurodegenerative disease that damages nerve cells known as motor neurons in the brain and spinal cord that control voluntary muscle movement. [...]
Healey Center for ALS in partnership with ALS Finding a Cure announces the 2021 ALS Scholars in Therapeutics Recipients
Class of 2021 The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital (MGH) in partnership with ALS Finding a Cure (ALSFAC) selected four recipients for their inaugural global two-year ALS Scholars in Therapeutics program. The program received an outstanding pool of global applications from 6 countries. This year’s selected recipients are Juliet Goldsmith, PhD of University of Pennsylvania, Matthew Anthony White, PhD of Kings [...]
ALSFAC-Funded Project Announces Successful ALS Clinical Trial and High-Profile Publication
ALSFAC-Funded Project Announces Successful ALS Clinical Trial and High-Profile Publication Amylyx, a start-up biotech company developing new treatments for ALS supported by ALS Finding a Cure®, and Mass General Hospital, announced the publication of results from its successful pivotal stage ALS clinical trial in the prestigious New England Journal of Medicine (NEJM). ALS Finding A Cure® provided two grants to Amylyx: the first in collaboration with Cure Alzheimer’s Disease [...]
ALSFAC Funded Research Turns Off Key Gene in Families with ALS
ALSFAC Funded Research Turns Off Key Gene in Families with ALS Researchers at the University of Massachusetts Medical School and Massachusetts General Hospital report progress on a potential new weapon against the fatal nerve disease ALS. Read More Report Progress
Team of Five Labs Launches Novel Attack on ALS
Team of Five Labs Launches Novel Attack on ALS Amyotrophic Lateral Sclerosis (ALS) can arise from aberrant genes. A group of five Brown University professors proposes that a cure may also come from aberrant genes – genetic mutations that suppress ALS. A new research grant supports their comprehensive investigation of ALS in flies, worms, mice and human cells.
Progress Coming in Amyotrophic Lateral Sclerosis, but Rigorous Studies Needed
Progress Coming in Amyotrophic Lateral Sclerosis, but Rigorous Studies Needed The community of individuals living with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease, has endured many false hopes for promising therapies and is still waiting for the first disease-modifying drug. Nevertheless, "we have made huge progress in the last decade in ALS," Merit Cudkowicz, professor of neurology at Harvard Medical School and chief of the neurology service and [...]
Johns Hopkins University, Cedars-Sinai and Massachusetts General Hospital Announce Groundbreaking ALS Research Project of Answer ALS
Johns Hopkins University, Cedars-Sinai and Massachusetts General Hospital Announce Groundbreaking ALS Research Project of Answer ALS Research Designed to Fully Understand and Defeat ALS; “Big Data” Technology Will Drive Unprecedented Analysis Capability $20 Million in Funding from Committed Team of Donors, including the National Football League, the PGA TOUR, ALS Finding a Cure (a project of the Leandro P. Rizzuto Foundation), Travelers, The Fishman Family and The Bari Lipp [...]
Karyopharm Advancing Neuroprotective SINE™ Compounds in Amyotrophic Lateral Sclerosis (ALS)
Karyopharm Advancing Neuroprotective SINE™ Compounds in Amyotrophic Lateral Sclerosis (ALS) Preclinical efficacy of SINE™ compounds validated in journal Nature publication– Presentations of ALS abstracts at upcoming AAN and SfN meetings – Collaborator grant funding supports Karyopharm’s ALS research– Newton, Mass. – September 3, 2015 – Karyopharm Therapeutics Inc. (Nasdaq:KPTI), a clinical-stage pharmaceutical company, today reported that its SINE™ nuclear transport compounds are being evaluated for the treatment of Amyotrophic [...]
Treg Study: Therapeutic Goal – To Increase Neuroprotective FoxP3 Tregs in ALS Patients
Treg Study: Therapeutic Goal – To Increase Neuroprotective FoxP3 Tregs in ALS Patients Research Summary Principle Investigator: Stanley Appel MD This study may lead to Treg cell therapy for symptom management or potential slowing of disease progression in ALS and related disorders. This study is to isolate T regulatory (Treg) cells from the blood using leukapheresis, and expand T regulatory (Treg) cells in the laboratory in up to twelve [...]
Development of AAV-Mediated SOD1 Gene Silencing Therapy in ALS
Development of AAV-Mediated SOD1 Gene Silencing Therapy in ALS Research Summary Principle Investigators: Robert Brown D.Phil., MD & Merit Cudkowicz MD About 10% of ALS cases are familial. Most of the known genetic defects in familial ALS act by triggering one or more toxic processes that impair the viability of motor neurons, leading to motor neuron death. This project will use viruses to introduce reagents into the brain and spinal [...]
Silencing of ALS-Causing Mutant Genes
Silencing of ALS-Causing Mutant Genes Research Summary Principle Investigators: Robert Brown D.Phil., MD & Merit Cudkowicz MD About 10% of cases of ALS run in families and are caused by mutant genes, including the first-identified ALS gene known as superoxide dismutase 1 (SOD1). In most cases, the mutant genes make a mutant, toxic gene product, which in the case of SOD1 is a protein with a propensity to misfold. Data [...]
DIALS (Dominant Inherited ALS) Network Research Summary
DIALS (Dominant Inherited ALS) Network Research Summary Research Summary While evidence of a pre-symptomatic period has emerged for a number of neurodegenerative diseases, a similar precursor period prior to symptom development in ALS has yet to be defined, and pre-symptomatic biomarkers of ALS have yet to be discovered. As a result, researchers are unable to target people in the very earliest stages of ALS, when neurodegeneration is most nascent [...]
Accelerating identification of cross-species suppressor genes and elucidating early pathophysiology in ALS
Accelerating identification of cross-species suppressor genes and elucidating early pathophysiology in ALS Research Summary Generate animal models and human cell models that will more accurately parallel familial ALS (fALS). The team will harness strengths of four powerful model systems (worms, flies, mice, human iPSCs) to develop a robust understanding of what goes awry in ALS neurons, while also identifying conserved, cross-species suppressor genes whose perturbation could stop ALS. [...]
SPINE ALS
SPINE ALS Research Summary The goal of this project is to measure spinal cord inflammation using [11C]PBR28-PET in 10 people with ALS compared to 5 healthy volunteers. Positron emission tomography (PET) is a technology that allows accurate measurement of certain proteins or metabolites in living people. We are using a PET tracer (contrast) called PBR28 that binds to active inflammatory cells and allows us to measure and localize brain [...]
AT HOME
Research Summary Only a small percentage of patients with ALS participate in clinical trials. A major reason is that trials are conducted in a limited number of academic medical centers, and that in-person visits are required on a frequent basis. At these visits, trial outcome measures are obtained, with trained evaluators performing these measures. Our study will test the hypothesis that ALS patients can perform clinically meaningful outcome assessments [...]
Nonclinical Safety Evaluation of AMX0035 to Support Translation to Clinical Trials
Nonclinical Safety Evaluation of AMX0035 to Support Translation to Clinical Trials Research Summary Principal Investigators: Joshua Cohen & Justin Klee Neurodegeneration and neurotoxic inflammation are hallmarks of ALS and together form a vicious cycle that is one of the key drivers of functional decline in patients. Our lead candidate, AMX0035, is a proprietary combination of two compounds that is designed to break this cycle, thereby halting clinical progression. Based [...]
MAP (Microbiome Assessment Project) in ALS
MAP (Microbiome Assessment Project) in ALS Research Summary There is growing interest in how the interplay between the intestinal microbiota (i.e., bacteria in the gut) and its host influence the onset and course of neurodegenerative diseases, potentially mediated by immune mechanisms which modulate the microglial environment. No studies have previously examined whether the overall composition of the intestinal microbiota, or specific bacterial species, are associated with ALS. In this [...]
ALERT (ALS Early Recognition Timeline) Project
ALERT (ALS Early Recognition Timeline) Project Research Summary People with ALS often seek evaluation from multiple providers prior to diagnosis, with an average time from symptom onset to diagnosis of 11.5 months. The goal of this study is to accelerate ALS diagnosis by developing a natural language processing-based algorithm to identify people at risk for ALS and a scale to help physicians identify people with ALS at early stages [...]
NeuroBANK™ as an Accelerated Clinical Research Environment: Development, Deployment and Services to ALS Research Community
NeuroBANK™ as an Accelerated Clinical Research Environment: Development, Deployment and Services to ALS Research Community Research Summary Principle Investigators: Merit Cudkowicz MD & Alex Sherman Successful implementation of NeuroBANK™ will allow for a standardized patient-centric approach to clinical research in ALS with information linked across studies, locations and modalities. Standard Common Data Elements, standard operating procedures and GUID technology will lead to accelerated studies' review, approval, deployment and patient [...]
Imaging Axonal Transport
Imaging Axonal Transport Research Summary Principle Investigator: Robert Brown D.Phil., MD The field of ALS needs a tool, often called a biomarker, by which the activity of this disease can be gauged. This is potentially important not only for diagnosing the disease, but also for identifying factors causing ALS and for gauging the efficacy of putative ALS treatments. One such biomarker is to quantify a parameter that directly reflects the [...]
Application of MultiOmyx to iPSC Models of ALS
Application of MultiOmyx to iPSC Models of ALS Research Summary Principle Investigator: Clive Svendsen PhD Induced pluripotent stem cell technology (iPSC) holds great promise for accelerating our understanding of the molecular mechanisms and pathways leading to motor neuron degeneration in ALS. In vitro cellular model systems generated from patient-derived iPSC lines can recapitulate many aspects of in vivo cellular pathology, and beyond basic disease research may serve as a [...]
Using Novel Imaging Agents as a Biomarker for ALS Progression in the fALS RAT
Using Novel Imaging Agents as a Biomarker for ALS Progression in the fALS RAT Research Summary Principle Investigator: Clive Svendsen PhD Assessing the progression of ALS in both animal models and the human condition would provide the ideal biomarker for testing novel compounds rapidly and efficiently. However, while MRI and other imaging modalities exist, they have not been fine-tuned for this neurological condition. Our rationale is that through better [...]
Biomarker Studies to Accelerate Diagnosis and Identify Therapeutic Targets Northeast ALS Consortium (NEALS) Biorepository Infrastructure Improvement and Expansion Protocol
Biomarker Studies to Accelerate Diagnosis and Identify Therapeutic Targets Northeast ALS Consortium (NEALS) Biorepository Infrastructure Improvement and Expansion Protocol Research Summary Principle Investigators: James Berry MD, Nazem Atassi MD & Merit Cudkowicz MD The exact cause of amyotrophic lateral sclerosis remains unknown, and there are no tests to diagnose the disease or follow its progression. Such tests, known as biomarkers, would be invaluable to speed the development of novel [...]
TRACK-ALS: Imaging and Biofluid Biomarkers in Amyotrophic Lateral Sclerosis
TRACK-ALS: Imaging and Biofluid Biomarkers in Amyotrophic Lateral Sclerosis Research Summary Principle Investigators: Nazem Atassi MD, Joseph Masdeu MD, PHD & A. Nadeem Ishaque PhD This is a very exciting collaborative project among industry, academia and the ALS Association (ALSA). The overall goal of this project is to identify new imaging markers of ALS that can be used to accelerate ALS diagnostic timelines and the pace of ALS drug [...]
A loved one’s diagnosis moved this UCLA Health researcher to take on ALS
A loved one’s diagnosis moved this UCLA Health researcher to take on ALS Computational geneticist developed a blood test that could detect how fast muscle cells are dying, potentially aiding diagnosis. After a parent is diagnosed with an incurable disease, it’s natural to feel an urge to do anything possible to help. For some people, that could be advocacy, or household assistance, or tracking down the best available [...]
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Coya Raises $10M to Advance T-cell Therapy Now in Phase 2 ALS Trial
Coya Raises $10M to Advance T-cell Therapy Now in Phase 2 ALS Trial Coya Therapeutics has raised $10 million in funding to advance the development of ALS001, a potential regulatory T-cell (Treg) therapy aiming to halt amyotrophic lateral sclerosis (ALS) progression, now in a Phase 2 study in patients. Proceeds raised in this series A funding round will also be used to introduce into testing similar treatments for other [...]
Answer ALS Launches ‘The Data is Here’ Campaign to Announce the Release of the World’s Largest Open Sourced ALS Data Portal
Answer ALS Launches 'The Data is Here' Campaign to Announce the Release of the World's Largest Open Sourced ALS Data Portal The Answer ALS Data Portal seeks to empower researchers around the globe with the data needed to finally answer ALS NEW ORLEANS, Jan. 8, 2021 /PRNewswire/ -- Answer ALS, in cooperation with the Stephen Hawking Foundation, launches "The Data is Here" campaign on January 8 and on what would have [...]
Multi-center, multi-tracer PET studies harmonized to detect neuroinflammation in ALS
Multi-center, multi-tracer PET studies harmonized to detect neuroinflammation in ALS Reston, VA--A novel ALS (amyotrophic lateral sclerosis) study has pooled data from multiple sites to effectively visualize neuroinflammation, which is key to developing drugs to treat the disease. Pooling data acquired from different scanners, different neuroinflammation positron emission tomography (PET) markers and different sites enhanced researchers' ability to detect neuroinflammation in ALS patients. This research was published in the [...]
Novus Therapeutics Announces First Patient Enrolled in Phase 2a Clinical Trial of Anti-CD40L Antibody AT-1501 in Amyotrophic Lateral Sclerosis
Novus Therapeutics Announces First Patient Enrolled in Phase 2a Clinical Trial of Anti-CD40L Antibody AT-1501 in Amyotrophic Lateral Sclerosis IRVINE, Calif.--(BUSINESS WIRE)-- Novus Therapeutics, Inc. (“Novus”) (NASDAQ: NVUS), a clinical stage biopharmaceutical company focused on developing life-changing, targeted medicines for patients undergoing organ or cellular transplantation, as well as those living with immunological diseases, today announced that the first subject has been enrolled in the Phase 2a clinical trial [...]
Aural Analytics To Power Speech-Based Endpoints For The Healey Center ALS Platform Trial at Mass General Hospital
Aural Analytics To Power Speech-Based Endpoints For The Healey Center ALS Platform Trial at Mass General Hospital The first-ever platform trial for ALS is set to kick off this month and is led by investigators at the Sean M. Healey & AMG Center for ALS at Mass General Hospital Aural Analytics’ award-winning clinical trials platform will provide speech collection and speech-based digital endpoints for the HEALEY ALS Platform trial [...]
ALS Drug Works in Study, Researchers Say
An experimental drug slowed the paralyzing march of amyotrophic lateral sclerosis, or Lou Gehrig’s disease, in a clinical trial, according to researchers who say the results are a fresh sign that recent insights into the condition may soon bring new medicines.
The ALS Association, ALS Finding A Cure, and MDA Co-Fund Clinical Trial Grant to Study Restoring Immune System Function to Treat ALS
The ALS Association, ALS Finding A Cure, and MDA Co-Fund Clinical Trial Grant to Study Restoring Immune System Function to Treat ALS The ALS Association, ALS Finding a Cure (ALSFAC), and MDA announced they have jointly awarded a clinical trial grant totaling more than $2.5 million over two-and-a-half years to leading investigators at the Houston Methodist Neurological Institute and Massachusetts General Hospital. The principal investigator is Stanley Appel, MD, [...]
ALS Organizations Collaborate to Advance New Therapeutic into Trials
ALS Organizations Collaborate to Advance New Therapeutic into Trials First dose of potential treatment AT-1501 given to humans by Anelixis Therapeutics to determine safety and tolerability Boston, MA (November 28, 2018) — Several ALS organizations announced on Wednesday that the first participant was successfully given a dose of AT-1501 in the first in-human trial of the potential treatment for ALS. AT-1501 was developed by the ALS Therapy Development Institute (ALS TDI), with [...]
The ALS Association and Prize4Life announce the ALS Assistive Technology Challenge
The ALS Association and Prize4Life announce the ALS Assistive Technology Challenge After the tremendous success of the ALS Ice Bucket Challenge, ALS organizations are in a position to foster the creation of much needed solutions for people with ALS. One such solution is assistive technology for communication, which for people with ALS who struggle with communication or are completely unable to communicate, has the potential to be not just [...]
Bio-IT World Announces Finalists For 2018 Best Practices Awards
April 20, 2018 | The finalists for the 2018 Bio-IT World Best Practices competition were announced today. This year, 21 projects from 30 different organizations were chosen for the final round of competition. Winners will be announced live at the Bio-IT World Conference & Expo on Thursday, May 17, during the plenary keynote session. Since 2003, the Best Practices Awards have highlighted outstanding examples of how technology innovations and [...]
ALS ACT (Accelerated Therapeutics) Request for Proposals: Early phase clinical development of novel, high-potential treatments for people with ALS
ALS ACT (Accelerated Therapeutics) Request for Proposals: Early phase clinical development of novel, high-potential treatments for people with ALS ALS Finding a Cure (ALS FAC), the ALS Association (ALSA) and the Northeast ALS Consortium (NEALS) are pleased to announce a call for phase I/II clinical trial applications for novel, high-potential treatments in Amyotrophic Lateral Sclerosis – ALS ACT. The call for clinical study proposals is intended for academic-industry partnerships, [...]
MeiraGTx Awarded Target ALS Grant For Its NMD-Based Therapy for ALS
MeiraGTx Awarded Target ALS Grant For Its NMD-Based Therapy for ALS MeiraGTx, a New York and UK based gene therapy company, announced today that it has been awarded a grant from Target ALS, a privately funded foundation bringing together a consortia of academic and biotech/pharmaceutical researchers focused on finding treatments for ALS patients. Target ALS is jointly funding this grant with the research organization ALS Finding A Cure®. [...]
The ALS Association and ALS Finding a Cure Announce Joint Funding Support for Amylyx Clinical Trial of AMX0035 for the Treatment of ALS
The ALS Association and ALS Finding a Cure Announce Joint Funding Support for Amylyx Clinical Trial of AMX0035 for the Treatment of ALS WASHINGTON and CAMBRIDGE, Mass., July 20, 2016 /PRNewswire-USNewswire/ -- The ALS Association and Amylyx Pharmaceuticals based in Cambridge, Mass. are pleased to announce that The ALS Association and ALS Finding a Cure® are jointly providing funding to support a Phase II trial of a potential new therapeutic approach being developed by Amylyx [...]
Big Data Analytics, Genomics to Spur Collaborative ALS Research
Three major academic medical centers are combining their big data analytics forces to tackle Amyotrophic Lateral Sclerosis (ALS), a common yet poorly understood degenerative neuromuscular condition. Johns Hopkins University’s Robert Packard Center for ALS Research, Cedars-Sinai Medical Center’s Regenerative Medicine Institute and the Massachusetts General Hospital Neurological Clinical Research Institute will coordinate research efforts to uncover the root causes of ALS, utilizing advances in genomics, precision medicine, machine learning, and pharmaceutical [...]
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