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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 […]
February 21, 2024 – 7AM ET This webinar will provide an understanding of the importance of nutrition in ALS/MND. We will address nutritional changes upon diagnosis, considerations for bulbar onset ALS/MND, and the myths and benefits of feeding tubes. Register Now
The Penn Frontotemporal Degeneration (FTD) Center is excited to open registration for our fourth annual familial conference, Uncovering the Genetics of FTD/ALS, on Wednesday, February 21st, 3:00PM to 6:00PM EST. Please register by visiting www.pennmedicine.org/FTDCFamilialConference2024. This event will take place virtually and the link will be provided once you've registered. Our team understands ALS, FTD, and related disorders can impact an entire family even when just one person is diagnosed. However, we also recognize the unique […]
Dr. Ikjae Lee, from the Eleanor and Lou Gehrig ALS Center at Columbia University, will present a summary of literature on the intake of various macronutrients and their impact on the progression of ALS. Building on this foundation, Dr. Lee will introduce recent findings that suggest a diet with a high glycemic index may be […]
We are kicking off State of Play for 2024 with a look at how tech research can help people living with MND. MND Australia's Dr Ben O'Mara will talk about the 'Game on with MND' project looking at how we can make gaming more accessible for people with MND and Dr Taylor Dick from the […]
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 traqueostomy, how it works, and considerations. Presenter: Susan Brumby
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 […]
This webinar will provide information on ALS/MND platform trials. We will hear from HEALEY, MAGNET and SMART. They will update us on their approach, recruitment, trial eligibility and their latest news. Moderator: Dr. Nicholas Cole - Chair of Scientific Advisory Council Panel: Dr. Sabrina Paganoni - HEALEY Trial Dr. Ruben van Eijk - MAGNET Trial […]
Title: The role of multidisciplinary care in ALS Date/Time: Thursday, March 28, 2024 at noon CST Link to register: https://attendee.gotowebinar.com/register/7883989190684308310 About the Program: Join us for our March ALS Learning Series, where team members and people living with ALS will explore the crucial role of collaboration in delivering holistic care. Discover how multidisciplinary clinics can […]
Wednesday, April 3, 2024 | 3:00 - 4:00pm EDT Participate in our upcoming ALS Town Hall on April 3rd to hear how ALS scientists, advocates, innovators, and gene carriers have collaborated to develop the "Light the Way" program. With the recent approval of a new gene therapy for people living with SOD1 ALS and the potential for […]
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 […]
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 other activities that will provide happiness and enjoyment.
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 traqueostomy, how it works, and considerations. Presenter: Susan Brumby
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 […]