Navigating Advanced Directives

Virtual

About the talk:  Advanced directives are legal documents that provide instructions for medical care. When living with ALS, it is important to think ahead about what kind of care you may want in the future. Advanced directives are a way to ensure that you, your family, and your ALS care team are all on the same…

Free

ALS Town Hall: Discover Roon – Your Ultimate ALS Resource

Virtual

Discover Roon: Your Ultimate ALS Resource for Answers to All Your Questions: Wednesday, April 17, 2024 | 3:00 - 4:00pm EDT Join us on April 17, 2024 for an ALS Town Hall led by Roon. Through Roon, a completely free app and website, you can find curated short videos answering thousands of the top questions that…

Mental Health In ALS/MND

Virtual

April 24, 2024 9:00 AM Eastern Time (US and Canada) This webinar will provide tools and recommendations for People living with ALS/MND, their caregivers and youth. We will learn how to take care of our mental health upon diagnosis, how to deal with our emotions like guilt and anxiety. And how to drive motivation and…

Free

Constipation in People Living with ALS: Does Autonomic Dysfunction Play A Role?

Virtual

Join us for an insightful session with Dr. Ghazala Hayat, MD, FAAN, FANA, FAANEM, as we delve into the prevalence and challenges of constipation in people living with ALS. Dr. Hayat will discuss how constipation might be connected to autonomic system problems in those with ALS, using new research and survey findings.

BLOWING UP THE PIPELINE: Stories from the frontlines of the ALS Revolution

Virtual

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.

Free

NEALS Webinar: An Overview of The ALS Better Care Act

Virtual

Join Dr. Terry Heiman-Patterson, Dr. Sabrina Paganoni, and Dr. Kelly Gwathmey's discussion of the importance of multidisciplinary care and the role of the ALS Better Care Act to ensure that quality care at Multidisciplinary Centers is maintained and access to care and trials is increased.

Free

I AM ALS: Clinical Trials 101

Virtual

What: Clinical Trials 101 When: May 9, 2024 6pm ET Where: Zoom I AM ALS’ Clinical Trial Community team will be hosting a monthly webinar series to increase people’s understanding of clinical trials in general, as well as ongoing ALS clinical trials and trial finder tools.  The first webinar will cover the basics of clinical trials. The following…

Free

Expanded Access 101

Virtual

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

Free

Brain Computer Interface (BCI) Trails in ALS

Virtual

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.

Free

Access for ALL in ALS (ALL ALS) Consortium

Virtual

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…

Free

Respiratory Support in ALS/MND

Virtual

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

Free

Developing tools to help people living with ALS make difficult decisions

Virtual

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…

Free

Promising Alternative and Off-Label Treatments for ALS

Virtual

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…

Free

Pridopodine for treatment of ALS

Virtual

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.

Free

Respiratory Care in ALS: ADVANCES IN REMOTE MONITORING

Virtual

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.

Free

Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life Report Launch Event

Virtual

  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…

Free

How To Control Your Phone With Your Voice

Virtual

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…

Free