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.
Please join us on Thursday, August 22nd, 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 be…
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 on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
Monthly EAP Discussion featuring Dr. Suma Babu (MGH)
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 on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.