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 […]
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 […]
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 […]
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.
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 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.
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 […]
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
