Please join us on Thursday, March 23rd at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc and Sabrina Paganoni, MD, PhD will present updates on the Platform Trial and answer questions from the audience. In addition, we will be joined by Jeffrey Rothstein, MD,…
Please join us for the Regimen F Drug Science Q&A Webinar on Monday, March 27th from 5:00-6:00 pm Eastern time. This webinar is open to all, and it serves as a great opportunity to learn more about the science and mechanism of action behind Regimen F, the most recent addition to the HEALEY ALS Platform Trial. Sabrina Paganoni, MD,…
Tuesday, March 28, 2023 12:30 PM ET Please join us for a webinar update on tofersen moderated by NEALS Co-Chair Dr. Jinsy Andrews. Dr. Timothy Miller will provide background on tofersen and updates from the March 22nd FDA Advisory Committee Meeting. Holly Fernandez Lynch, an expert in FDA pharmaceutical policy and regulatory standards, will be…
Familial or sporadic ALS/MND, the importance of genetic counselling and testing cant be emphasized enough. Join us for this scenario-based discussion which will look at real situations ranging from an ALS/MND asymptomatic carrier to someone whose parent had ALS/MND, but has not done genetic testing.
Join us for an educational overview of the Advanced Research Projects Agency for Health (ARPA-H), the new government agency proposed by President Biden to improve the government’s ability to speed biomedical and health solutions. This agency was created to support transformative research and development to drive biomedical and health breakthroughs – ranging from molecular to…
It’s often thought that ALS only affects older, white men. The reality is that an entire community of women are currently living with ALS and they’re working hard to change this misunderstanding and build awareness that this disease can impact everyone. When women are diagnosed with ALS, it is a unique experience with specific challenges…
The ALS Research Collaborative (ARC) and ARC Data Commons Discussion and demo led by Dr. Fernando Vieira Thursday, April 6, 2023 | 3:00 - 4:00pm EDT On Thursday, April 6, 2023 at 3:00 pm ET, join a special ALS TDI Town Hall to hear Dr. Fernando Vieira, CEO and CSO at ALS TDI, provide an overview…
Prof Guillaume Hautbergue is an expert in RNA biology and he and his lab recently published on a peptide that was able to prevent the death of nerve cells and protect them from degeneration in C9orf72-ALS/FTD animal models. He also recently reported a gene therapy approach targeting the same biological process. More Information: https://www.sheffield.ac.uk/neuroscience-institute/news/scientists-discover-how-prevent-death-nerve-cells-most-common-genetic-forms-mnd-and-dementia
Intimacy and ALS Led by members of the ALS community Tuesday, April 18, 2023 | 5:30 - 7:00pm EDT From dating and relationships to sexuality and your sex life, ALS changes a lot. This special 1.5-hour-long ALS Town Hall will attempt to cover the many ways that intimacy can be affected by ALS, while also discussing how…
About the Event Dr. Ajami is an Assistant Professor of Immunology and Behavioral and Systems Neuroscience at OHSU. Her research is focused on how immune cells provokes the pathology in different neurodegenerative diseases. Her work aims at describing immune pathways that leads to the damage to the brain tissue and ultimately discover the molecules that…
Title: ALS Exercise Date: Thu, Apr 20, 2023, 12:00 PM - 1:00 PM CDT Registration link: https://attendee.gotowebinar.com/register/3042676758300304988 About the Program: Many people living with ALS struggle to understand whether it is OK to exercise, what kind of exercise is most beneficial, and whether exercise slows disease progression. Please join as, Hannah Redd PT, DPT, NCS, at…
NEALS Webinar: Tofersen Update Tuesday, May 2, 2023 4:00 PM ET The U.S. Food and Drug Administration (FDA) has granted accelerated approval for tofersen for the treatment of individuals with superoxide dismutase 1 (SOD1) amyotrophic lateral sclerosis (ALS). Join Dr. Timothy Miller for a webinar update following the FDA’s recent announcement moderated by NEALS…
Implications of tofersen for everyone with ALS Tuesday, May 2, 2023 4:45 PM ET The FDA’s recent decision to approve tofersen offers direct benefit to people living with SOD1 ALS, and offers hope to everyone else living with ALS as well. Join the team from The ALS Association to discuss the implications of this…
About the Program: The practice of genetic testing in ALS has been impacted by high patient demand for testing, sponsored testing programs, and a new drug application to the FDA for the first gene-targeted therapy in ALS. However, many challenges exist, including few genetic counselors in ALS clinics, and issues with laboratory methods and reporting. Jennifer…
An ALS diagnosis often comes out of nowhere. Most people do not even know what ALS is until they are diagnosed with it. Unfortunately, there are families where ALS is very well understood and an ALS diagnosis is common. People with familial ALS often have several known relatives who have lived and, in most cases,…
A panel with occupational therapists in ALS/MND providing recommendations for PALS at different stages of their journey. Tips, considerations, and what can be done at home.
