Webinar

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.

Have you ever wondered who all these healthcare professionals are and how they take care of you? So join us for this presentation of the professional panel. We have set up four panels, three in French and one in English, where health professionals from ALS clinics, CLSCs and rehabilitation centers will explain their profession and their role […]

Have you ever wondered who all these healthcare professionals are and how they take care of you? So join us for this presentation of the professional panel. We have set up four panels, three in French and one in English, where health professionals from ALS clinics, CLSCs and rehabilitation centers will explain their profession and their role […]

An individual’s mental health and how they are supported is important when facing an ALS diagnosis. On October 11, please join presenters from Sunnybrook ALS Clinic and Hospice Niagara, who will provide in-depth information about the importance of emotional health, conversations about anticipatory grief, and how individuals, family, and friends can access mental health resources […]

About the Program: Informed consent is an essential component of research, but have you ever wondered why? Join us for our October ALS Learning Series where Emma Schmidt, Clinical Research Project Manager at the Les Turner ALS Center at Northwestern Medicine will discuss the history behind informed consent, explain the process of informed consent, your […]

Time: 12:30pm - 1:00pm In this session Caroline Bidder, MND Network Coordinator, Swansea Bay will answer questions about how an MND network operates, what makes this dispersed model of care the appropriate one, and the impact it has on people living with and affected by MND. No need to book. Join using the link and passcode […]

Time: 11.00am – 12.30pm Aim: To increase understanding of how pain may be experienced in MND and potential methods to treat it. Objectives: to examine current practice for pain management in MND to evolve our understanding of pain in MND and how to alleviate it to explore current thinking and research about pain management and possible future […]

Join us for our December ALS Learning Series with Dr. Melinda S. Kavanaugh. Dr. Kavanaugh will discuss ways in which ALS affects mental health and the need for support – for both the person living with ALS and their caregivers, including the children and youth. Dr. Kavanaugh will also review recent research findings informing supportive […]

Title: A conversation with a genetic counselor: Could the ALS in my family be genetic? Speaker: Laynie Dratch Date/Time: Wednesday, January 31, 2024 at 12:00pm CST Link to register: https://attendee.gotowebinar.com/register/233260727250953046 About the Program: About the Program: Navigating ALS care can be complicated and filled with many complex decisions, including whether genetic testing is right for you. Join us for a […]

Moderated by Dr. Senda Ajroud-Driss, this webinar for both clinicians and people living with ALS will review the 3 drugs that are currently FDA-approved in the United States for the general ALS population. Panelists, Dr. Lauren Elman, Dr. John Novak, and Dr. Xiaowei (Bill) Su will present information on Riluzole, Radicava, and Relyvrio, including drug […]

Title: Navigating Advanced Directives Date/Time:  Monday, April 15th at noon CST Registration link: https://attendee.gotowebinar.com/register/8687536477912516955 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 […]

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 […]

DAY 1 | MEDICAL | Aetiology, Diagnosis and Genetics AUDIENCE | General Practitioners, Neurologists, Nursing fraternity and Allied health practitioners The Motor Neuron Disease Association of South Africa and Genoa Underwriting Managers are delighted to invite you to a webinar hosted via the Zoom platform.  Hosted over 3 days, local and international guest speakers will discuss […]

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 […]

DAY 3 | LAW AND ETHICS | Ethics AUDIENCE | Everyone The Motor Neuron Disease Association of South Africa and Genoa Underwriting Managers are delighted to invite you to a webinar hosted via the Zoom platform.  Hosted over 3 days, local and international guest speakers will discuss Motor Neuron Disease. Local and international guest speakers […]

Date/Time:  Thursday, August 29, 2024 at 12pm CST Title: Empower your voice: Navigating conversations with your ALS care team Registration Link: https://us02web.zoom.us/webinar/register/WN_9ZTnqnxhQZ6yIkLTNOZ8Wg 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 […]

Title:  Open Enrollment Matters: Health Insurance Considerations for People Diagnosed with ALS Registration Link: https://us02web.zoom.us/webinar/register/WN_6A8UOAtqR2eiOF9RJUYz9A#/registration About the Program 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 […]

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 final installment in the "Advanced Respiratory Care in ALS" series as we delve into the complexities of respiratory failure in ALS. This session will focus on crucial end-of-life and quality of life considerations, aiming to facilitate timely advanced directives. Our expert presenters will discuss key aspects of respiratory care, including the […]

About the Program Join us for our October ALS Learning Series where Dr. Tavee will discuss complementary and alternative therapies for people living with ALS. These therapies can play a major role in helping people living with ALS feel better. Dr. Tavee will cover areas like nutrition, exercise and mind body therapies with a Q&A […]

This webinar will provide information on ALS/MND treatments currently in Clinical Trials. We will hear directly about timelines, where the sites are, other programs offered and who to contact if more information is needed.

About the Program Join us for our November ALS Learning Series about hope with Dr. Richard Bedlack. In this talk, Dr. Bedlack will review what he has learned about hope in health and diseases, including ALS. He’ll talk about why it matters, where it comes from, what clinicians do to boost and to suppress it, […]

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 happening with the current ones, and where they hope to […]

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 […]

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 […]

ALS/MND PLATFORM TRIALS UPDATE   19 March 8 am ET Registration: https://us02web.zoom.us/webinar/register/WN_GEOgomftSVOcV0woGWug4g#/registration We will have captions available   This webinar will provide information on ALS/MND platform trials. We will hear from HEALEY, EXPERTS ALS and SMART. They will update us on their approach, recruitment, trial eligibility and their latest news.

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 […]