We are excited to host EverythingALS Community Event: Augmentative communications program for ALS. We invite you to join us and other people with ALS and families to engage in a positive setting of collaboration and community. The meeting will be on Wednesday, April 27, 2022 at 4:00 pm PT -5:00pm Mountain Time -6:00pm Central…
Thursday, April 28, 2022 from Noon to 1:00pm CT About the Program: Are you a veteran living with ALS? Need help navigating the Veterans Administration system and don’t know where to start? Hear from Robert Statam, Sr. and Winston Woodard III of the Paralyzed Veterans of America (PVA) who specialize in providing navigation services for…
Please join us on Thursday, April 28th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial and a special introduction to Kelly G. Gwathmey M.D., site investigator at Virginia Commonwealth University. Sabrina Paganoni, MD, Ph.D., and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform Trial and…
The various pathways of preapproval access are confusing, and often misunderstood. CUPA will help bring clarity to this complex topic. About this event Most people access unapproved medical products through clinical trials, but what happens when patients can’t get into a clinical trial, or there is no trial focused on treating their disease? Non-trial…
Register to Attend a Community Discussion on ALS Research and Trials Next Tuesday, May 3rd, join Dr. Nadia Sethi, the Director of Community Outreach and Engagement at the ALS Therapy Development Institute (ALS TDI), for a new virtual discussion series – ALS TDI Community Conversations. Through these conversations, Nadia will provide information on research and clinical trials while…
Please join us on Thursday, May 5th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial and a special introduction to Peter Foss, president of ALS Finding a Cure. Sabrina Paganoni, MD, Ph.D., and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform Trial and…
A Phase 2a Study of TPN-101 in Patients with C9ORF72 ALS/FTD (Amyotrophic Lateral Sclerosis and/or Frontotemporal Dementia) Merit Cudkowicz, MD, MSc Sean M. Healey & AMG Center for ALS at Mass General Hospital Friday, May 6, 2022 10:30 - 11:30 AM EDT The purpose of this webinar is to provide an overview of a new…
About the Event Michael Snyder, Ph.D. Title: Moving from a few genes to a genetic architecture for ALS and the insights it provides Michael Snyder, Ph.D., Professor in Genetics Stanford University School of Medicine Bio: 977 B.A, Chemistry and Biology, University of Rochester, NY 1978-1982 Ph.D. California Institute of Technology, CA Advisor: Dr. Norman Davidson…
About the Program: This webinar will guide people living with ALS and their loved ones through easy-to-understand actionable steps for securing a financial future and optimizing health care. A diagnosis of ALS makes planning for the future more important than ever. These discussions are not easy, but taking the time to gather information and think…
Please join us on Thursday, May 19th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial and a special introduction to Dr. Nadia Sethi, a member of our Patient Advisory Committee. Sabrina Paganoni, MD, Ph.D., and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform…
In recognition of ALS Awareness Month, the Dotdash Meredith DEI Team is partnering with Verywell Health, the ALS Association and Everything ALS to discuss the challenges of ALS with a focus on underrepresented communities. Join us on Tuesday, May 24, 3 p.m. ET. Understanding ALS-Link-FINAL Dr. Jessica Shepherd Chief Medical Officer @Verywell Health Moderator Deb Fabricatore…
Register to Attend a Community Discussion on ALS Research and Trials On Tuesday, May 24th, join Dr. Nadia Sethi, the Director of Community Outreach and Engagement at the ALS Therapy Development Institute (ALS TDI), for a new virtual discussion series – ALS TDI Community Conversations. Through these conversations, Nadia will provide information on research and clinical trials while…
About the Event In this webinar our speaker, MATTHEW S. MILLER PhD, Associate Professor, Biochemistry & Biomedical Sciences talks about Immunity, Virus, and the Role of Inflammation in ALS. We look forward to seeing you there! To Register: EverythingALS.org/research Questions: Info@EverythingALS.org RSVP
Please join us on Thursday, May 26th at 5:00 pm EST (4:00pm CST/2:00pm PST) for our weekly Q&A webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, PhD and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform Trial and answer questions from the audience.
Please join us on Thursday, June 2nd at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, Ph.D., and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform Trial and answer questions from the audience. We will also be joined by guest speaker Daniel…
Discussion on Supplement Use for People with ALS Led by Dr. Jinsy Andrews and Dr. Merit Cudkowicz Wednesday, June 8, 2022 | 3:00 - 4:30pm EDT On June 8th, join us for a discussion on supplement and off-label medication use for people living with ALS, led by Dr. Jinsy Andrews, co-chair of NEALS and Director of Neuromuscular…
Please join us on Thursday, June 9th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, Ph.D., and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform Trial and answer questions from the audience. We will also be joined by guest speakers Honora…
You are invited to attend our first event in the new Town Hall series “Meet Your ALS Orgs”. ALS TDI is thrilled to be partnering with I AM ALS, Answer ALS Research Program, and the NEALS Patient Education & Advocacy Committee on this new series – creating a platform for the ALS community to meet some of the key people…
Join the Conversation on June 14 Overview of research at ALS TDI and current clinical trials. Tuesday, June 14, 2022 | 5:00 to 6:00pm EDT ET Led by Dr. Nadia Sethi Join Dr. Nadia Sethi, the Director of Community Outreach and Engagement at the ALS Therapy Development Institute (ALS TDI), for this new virtual discussion…
Please join us on Thursday, June 16th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, Ph.D., and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform Trial and answer questions from the audience. We will also be joined by guest speaker Bruce…
The ALS Association/Northeast ALS Consortium Educational Webinar Healey ALS Platform Trial Regimen E: A Participant's Guide Friday, June 17, 2022 5:00 - 6:00 PM EDT The purpose of this webinar is to provide an overview of how SLS-005 (trehalose) may help to slow ALS and illustrate what potential participants can expect when enrolling in Regimen…
About the Program Many people living with ALS qualify for Medicare to provide their health insurance after they are no longer working full-time. This presentation will examine Medicare eligibility, enrollment, coverage, costs, assistance paying for costs, and considerations when choosing between traditional Medicare and a private Medicare advantage plan. Questions, answers and discussion will follow…
Weekly Q&A with guest speaker Jackie Whitesell, MD of Saint Alphonsus Medical Center in Idaho
This webinar will cover the vital need for patient involvement in ALS clinical trials in order to improve recruitment, retention and data quality, as well as readiness to adhere to impending regulatory changes. Join Paul Wicks, Ph.D., a neuropsychologist, independent consultant and Sano Genetics investor and Cathy Collet, a world-leading ALS advocate, for an important…
Please join us on Thursday, June 30th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, Ph.D., and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform Trial and answer questions from the audience. We will also be joined by guest speaker Gale…