Expanded Access 101 - Presented by the Working Group on Compassionate Use & Preapproval Access (CUPA) Date & Time May 15, 2024 12:00 PM Description Our annual introductory webinar covering the basics of the expanded access (compassionate use) pathway of access to investigational medical products
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
National Institutes of Health (NIH) funded “ALL ALS” consortium is a multi-institutional effort that aims to organize the ALS clinical research landscape in the US. ALL ALS is operating in partnership with several stakeholders to operationalize the recommendations of the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS) Public Private Partnership. ALL […]
May 29, 2024 7:00 AM Eastern Time (US and Canada) This webinar will cover the essentials to understand respiratory support in ALS/MND. We will cover how breathing is affected, what care and support can be followed, non-invasive equipment available, and what is a tracheostomy, how it works, and considerations. Presenter: Susan Brumby
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
About the program: People living with ALS must make many complex decisions regarding their future care needs, which can be stressful and overwhelming. In our upcoming ALS Learning Series, with Dr. Anne Hogden, she’ll discuss how she and other researchers have collaborated with the ALS community, their family members, and their ALS care teams to develop tools […]
In this educational webinar, Dr. Richard Bedlack of ALSUntangled will review what he considers to be the most promising alternative and off-label ALS treatments currently. These products, which include vitamins, supplements, and medications approved for other conditions, all have plausible mechanisms and at least one human trial demonstrating a statistically and/or clinically meaningful benefit. Known […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Join us for this inaugural webinar, which marks the beginning of our four-part NEALS Community Education series on advances in respiratory care in ALS. This series, organized by the NEALS Respiratory Care and Ventilation Committee, will focus on respiratory assessment innovations and clinical implementations.
Event description: Amyotrophic lateral sclerosis (ALS) is a rapidly progressive, fatal neurological disease. Individuals affected by ALS include those living with ALS, their caregivers and families, at-risk ALS genetic carriers, and others. Currently no treatments stop or reverse the disease, although various FDA-approved formulations may extend life by several months. Congress called on […]
About the program: What can you do to control your phone or tablet, when tapping on the screen becomes difficult? June's ALS Learning Series will describe in detail how to control your mobile devices totally hands-free with just your voice. After seeing how powerful Voice Control is on iPhones and iPads, and Voice Access is on […]
June 21, 2024 – 10:00 AM Eastern Time (US and Canada) On June 21, Global ALS/MND Awareness Day, we’ll be holding a public webinar, moderated by our Chair, Calaneet Balas, to explore the impact of the Ice Bucket Challenge, and how it raised the profile of the ALS/MND and led to significant advancements in care, […]
Tuesday, June 25th, 2024 4:30 - 5:30 PM ET Genetic counselors Lauren Lichten and Laynie Dratch will describe the genetics of ALS, why genetic counseling and testing may be of value to a family impacted by ALS, and what to expect from the process. They will be joined by genetic counselor Jennifer Roggenbuck and Dr. […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
As part of our community webinar series, we will dedicate one Thursday each month to a discussion about Expanded Access and Expanded Access Protocols (EAPs). Please join us on Thursday, July 11th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session featuring guest speakers from our EAP Patient Advisory Committee.
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
About the Program Join us for our July ALS Learning Series where we will share information about work being done in the areas of inclusion and education in relation to ALS Clinical Research. We will highlight the Northeast ALS Consortium (NEALS) Clinical Research Learning Institute (CRLI) Research Ambassador Program, Community Education Webinars hosted by NEALS, […]
Please join us on Thursday, July 25th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, PhD, will present updates on the Platform Trial, share ways to stay connected to news in ALS research, and answer questions from the audience. This week, we will shine a […]
Wednesday, July 31st, 2024 4:00 - 5:00 PM ET Webinar II of the Respiratory Care in ALS webinar series presented by the NEALS Respiratory Care and Ventilation Committee. Advances in Cough and Secretion Management in ALS, will focus on use of the validated Oral Secretion Scale (OSS) for predicting tolerance of noninvasive ventilation and management of secretions. Indications […]
Share Your Experience and ALS Advance Research – Join the ARC Study Led by Alan Premasiri, Sr. Manager, Clinical Operations at ALS TDI Thursday, August 1, 2024 | 3:00 - 4:00pm EDT Join us for a virtual discussion about the ALS Research Collaborative (ARC) study! This innovative research initiative allows people with ALS to share their unique […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Namita Goyal, MD Dr. Namita Goyal is the director of the UCI Health ALS & Neuromuscular Center. With support from the axeALS Foundation and the Sean M. Healey & AMG Center for ALS at Mass General, Dr. Goyal led efforts to establish an EAP program at UCI Health in September 2023. Amanda Stevens Amanda and […]
Join us for an insightful update on the Himalaya Trial presented by Nazem Atassi and Merit Cudkowicz. During this webinar, Dr. Atassi and Dr. Cudkowicz will present the results of the Phase 2 trial in ALS and answer questions. Don't miss this opportunity to learn about the latest developments in ALS research from leading experts […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Presented by Heather Pillar Author of the new book, Memento Morrie: Images of Love and Loss with an introduction by CCALS Founder, Ron Hoffman Sunday, August 25, 2024 1:00 p.m. ET Join us for an informative and inspirational return to the wit and wisdom of Morrie Schwartz, the subject of Mitch Albom’s international best-seller, Tuesdays with Morrie. […]
Join us for the third webinar in the Respiratory Care in ALS series by the NEALS Ventilation and Respiratory Care Committee. This session will cover the current US guidelines for using non-invasive ventilation (NIV) in ALS, including research and clinical insights for optimizing NIV.
About the Program: Join us for our August ALS Learning Series on advocating for yourself and effectively communicating with your ALS health team, presented by Dr. Ambereen Mehta and Dr. Suzana Makowski, two leading palliative care ALS experts. This session will provide people living with ALS, their families, and care partners with practical strategies to ensure […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Join us for the NEALS NICE Working Group Webinar on "The Role of Biomarkers in ALS" with James Berry, MD, MPH, and Bob Bowser, PhD, both principal investigators from the Access for All in ALS (ALL ALS) Consortium. They will discuss the evolving role of biomarkers in ALS. Biomarkers are biological markers, often genes and […]
Open Enrollment is the time each year when consumers can sign up or make changes to their health insurance coverage. This presentation will outline why you should care about Open Enrollment, factors to consider when enrolling in a new plan, and the importance of choosing your plan wisely, especially for those diagnosed with ALS. We […]
Join us for the NEALS webinar, "Feeding Tubes for People Living with ALS: What You Need to Know Before Getting One." Presenter Molly Spitz, RD, an ALS-focused registered dietitian from Barnes Jewish Hospital in St. Louis, MO, will share essential information and insights about feeding tubes. Don't miss this opportunity to learn and ask questions […]
Join us for the NEALS webinar, "Feeding Tubes for People Living with ALS: What You Need to Know Before Getting One." Presenter Molly Spitz, RD, an ALS-focused registered dietitian from Barnes Jewish Hospital in St. Louis, MO, will share essential information and insights about feeding tubes. Don't miss this opportunity to learn and ask questions […]
Join us to hear Dr. Fernando Vieira, CEO and CSO of the ALS Therapy Development Institute, and Dr. Richard Bedlack, Director of the Duke ALS Clinic, share the latest findings from the IGFBP7 ARC Study. This is a rare opportunity to gain insights into cutting-edge research and have your questions answered by two of the […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Title: Stitching Strength: What I have learned about hope in ALS and how I am trying to weave that into my practice Speaker: Dr. Richard Bedlack Date: Thursday, November 14, 2024, at 10 am CST Link to register: https://us02web.zoom.us/webinar/register/WN_vs8Q-VTUSTGCd0r5XmWiaQ About the Program: Join us for our November ALS Learning Series about hope with Dr. Richard Bedlack. In […]
Join this webinar to explore innovative, multidisciplinary approaches in disease modeling, drug testing, and tissue engineering using advanced in vitro systems. Dr. Francesco Saverio Tedesco will present cutting-edge examples, including the development of advanced muscle models for studying muscular dystrophies and designing more efficient, targeted therapies for neuromuscular diseases. Attendees will also gain insight into […]
Shifting the PARADIGM: PrimeC, an Oral Candidate for ALS, Demonstrates Safety, Efficacy, and Target Engagement Biomarkers in a Phase 2b Trial Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen […]
Register to hear the personal accounts of life with ALS and treatment with RADICAVA ORS® (edaravone) from 2 people living with ALS. Moderated by an ALS advocate and volunteer, join these panelists as they share their personal advice and perspectives on navigating their journeys with ALS. Brought to you by Mitsubishi Tanabe Pharma America. Stephanie Cantos Stephanie […]
Please join us on Thursday, November 21st, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the ALL ALS Consortium. James Berry, M.D., M.P.H., and Bob Bowser, Ph.D., will present updates about Access for All in ALS (ALL ALS), share ways to stay connected to news in ALS research, and answer questions from […]
These webinars aim to inform and answer participant questions on the NINDS Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access (U01 Clinical Trial Required) RFA# TBD. The goal of this announcement is to support the conduct of scientific research utilizing data from expanded access (EA) for investigational drugs or biological products for patients living […]
Please join us as we welcome Dr. Marjan Sepassi, Vice President of Medical Affairs at Clene Nanomedicine, for our next Expert Talk webinar. Dr. Sepassi will be discussing CNM-Au8 long-term evidence and providing an EAP Program update.
Advanced methods of machine learning have paved the way for a new generation of medical and clinical research. New methods and data resources can offer better diagnostics, new therapeutics, and disease management. Conditions such as ALS are uniquely suited to benefit from these strategies, but there are important considerations. From the basics of what makes […]
People with ALS can experience emotional distress and mood-related issues such as depression, a decline in quality of life, and feelings of hopelessness and helplessness, known as existential distress. There are few therapies that currently treat these symptoms in a significant or sustained way, and those that do often have unwanted side effects and limited […]
About the Program: Join us for our December Learning Series with Dr. Suzana K.E. Makowski, medical director of Compassionate Care ALS. Dr. Makowski will discuss spirituality and its role in ALS, along with where we can find light in the darkness and gratitude as we enter a new season and new year. The Les Turner ALS […]
Wednesday, January 15th 2025 1:00 PM - 2:00 PM ET In this webinar, Drs. Andrews, Babu and Bedlack will explain what Expanded Access Programs (EAPs) are and how they differ from other pathways by which people living with ALS can access experimental products. They will review what we have learned from recent EAPs, what is […]
Tuesday, January 21, 2025 11:00 AM - 12:00 PM ET Join us for a NEALS webinar featuring an overview of 2024 milestones, key updates, and plans for 2025. Led by NEALS Co-Chairs Dr. Jinsy Andrews and Dr. James Berry, this one-hour session will provide a Year in Review and highlight NEALS’ initiatives. Additionally, Dr. Jeremy […]
Please join us on Thursday, January 23rd, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the ALL ALS Consortium. Members of the ALL ALS study team will present updates about Access for All in ALS (ALL ALS), share ways to stay connected to news in ALS research, and answer questions from the […]
About the Program: ALS research depends on people living with ALS to join the National ALS Registry. Every individual’s story can contribute to our understanding of the disease, its causes, and how to fight it. Join us for our January ALS Learning series with Reshma Punjani and Janie Gobeli to learn how the National ALS Registry […]
About the Program: Every caregiver — and every caregiving journey — is unique, but there are some commonalities among caregivers of family members living with ALS. Most say caregiving is at the same time challenging, exhausting, rewarding, and full of unexpected emotions. Linda Levine is a caregiver for her husband David Buseck, a person with ALS. […]
In 2016, a "secret shopper" initiative was launched to assess the responsiveness of ALS clinical trial sites to patient inquiries. The findings revealed significant challenges in both the quality and quantity of responses, highlighting areas needing improvement. This webinar revisits the study in 2024 to evaluate current site responsiveness compared to the 2016 baseline. We […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
“I don’t want to talk about it.” “Not today.” Talking about dying is difficult. It’s a conversation many of us avoid, postpone, or put off—sometimes until it’s too late. But having these conversations with your loved ones can be a valuable gift. We invite you to join a webinar on essential end-of-life planning topics, including wills, […]
Exposomics and epigenetic ALS insights: How exposures alter ALS risk and progression Dr. Goutman will discuss the role of environmental exposures on ALS based on studies conducted through the University of Michigan and the Pranger ALS Clinic at Michigan Medicine.
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions. Platform Trial Learnings with Biostatistician Lori Chibnik Lori Chibnik, PhD, MPH Lori Chibnik is a biostatistician and Assistant Professor with an appointment in the Department of Neurology at Massachusetts General Hospital and the Department of Epidemiology […]
Join us on Thursday, March 6th at 6PM EST for a webinar where youth members of I AM ALS and Lorenzo’s House will come together to share their personal experiences with ALS and young-onset dementia. During this panel, they will discuss how they advocate for greater awareness of these conditions and the impact they have […]
Join us for a NEALS NICE Working Group webinar, on evidence-based respiratory interventions aimed at improving outcomes for individuals with amyotrophic lateral sclerosis (ALS). Dr. Emily Plowman and Dr. Jason Ackrivo will present the latest research and clinical recommendations on respiratory care in ALS. Following their presentations, a panel discussion featuring Dr. James Wymer and […]
In this upcoming Town Hall, ALS TDI and Corsalex will discuss their collaboration to advance the discovery and development of effective treatments for ALS and FTD caused by C9orf72 mutations. This scientific discussion may be of particular interest to industry professionals and academic researchers, but anyone in the community is welcome to attend. Corsalex will also share […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
Hope is more than just an idea—it’s a powerful force that shapes resilience, fosters connection, and drives meaningful change. In this inspiring webinar, Dr. Richard Bedlack from Duke will share insights on the importance of hope and how it can be actively woven into daily practice, both personally and professionally. Join us for "Stitching Strength: Things […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
About the Program: In this talk Dr. Berry will discuss the aims, design considerations, and implementation of observational studies, highlighting the many ways observational studies hastened drug development and can create resources that aid the ALS community in the present and for years to come. About the Speaker: Dr. Berry leads the Massachusetts General Hospital […]
Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]
This webinar provides a behind-the-scenes look at how ALS/MND specialists are trained to approach difficult conversations and decisions in a compassionate, patient-centered way. While designed specifically for clinicians, this session may be of interest to individuals living with ALS and care partners who want to understand the communication skills and tools used by their healthcare […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
Join us on Monday, April 14th at 7pm ET for an important discussion with staff from the ALS clinic at Georgetown University about ALS clinical trial participation. We will explore both challenges and positive experiences from the perspective of people living with ALS (pALS) and their caregivers. Objectives: Understand key challenges faced by pALS and caregivers […]
Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]
Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]
On Tuesday, April 22nd at 6pm ET members of the IAA community who utilize voice technology will join staff from Bridging Voice for a panel discussion. Participants will discuss their own experiences as well and Bridging Voice will provide insight into the technology options and walk through what the process of getting started entails. If […]
The ALS Exposome: How Environmental Exposures Inform Disease Risk and Prevention Join us for our April ALS Learning Series with Dr. Goutman, a neurologist from the University of Michigan. Dr. Goutman will discuss research related to how environmental exposures influence ALS. A Q&A will follow. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS […]
Stay connected to news in ALS research and get answers to your questions about observational research! Join us on Thursday, April 24th, at 5:00 pm EDT (4:00 pm CDT/2:00 pm PDT) for a webinar update about the Access for All in ALS (ALL ALS) Consortium. Guest speaker Dr. Mark Garret, along with Patient Navigator Myah Stone, will […]
Discover the Power of Your EHR Data in ALS Research. Join Dr. Danielle Boyce for a Town Hall to learn how ALS TDI's ARC Study is using electronic health records (EHRs) to drive ALS research breakthroughs. Dr. Boyce will discuss the current landscape of EHR research, revealing how ALS TDI is leveraging these records to advance our research […]
Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]
