Join us for the third webinar in the Respiratory Care in ALS series by the NEALS Ventilation and Respiratory Care Committee. This session will cover the current US guidelines for using non-invasive ventilation (NIV) in ALS, including research and clinical insights for optimizing NIV.
An open, supportive monthly bereavement group for anyone (family, friend, etc.) who has lost a loved one to ALS within the past year. This group will provide a place to connect with others who have experienced the loss of a loved one to ALS; stories will be told, feelings will be explored, and information will…
Presented by Heather Pillar Author of the new book, Memento Morrie: Images of Love and Loss with an introduction by CCALS Founder, Ron Hoffman Sunday, August 25, 2024 1:00 p.m. ET Join us for an informative and inspirational return to the wit and wisdom of Morrie Schwartz, the subject of Mitch Albom’s international best-seller, Tuesdays with Morrie.…
Please join us on Thursday, August 22nd, 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, PhD, will present updates on the Platform Trial, share ways to stay connected to news in ALS research, and answer questions from the audience. This week, we will be…
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.
Meets the Third Tuesday of each month from 1 – 2:30pm Facilitator: Anne Lidsky, PhD Visit: https://lesturnerals.org/support-services/support-groups-education/ to sign up. *Meetings will be held over Zoom and a Zoom invitation will be sent via email once you register for the group.*
The Caregivers Only group offers a time to talk about all the issues caregivers face in a non-judgmental, accepting atmosphere without their loved one, who is living with ALS, being present. Caregivers share a common experience; life has become so tumultuous that they often feel exhausted and overwhelmed, hungry for emotional comfort. Together, with the…
Join C-Path and the FDA in a discussion of clinical outcome assessments (COAs) versus clinical endpoints and how these findings will be used to advance additional research and to support future clinical trials. There will also be a Q&A session. To register and submit questions in advance of the discussion, visit: https://c-path-org.zoom.us/webinar/register/WN_KYeJlRqkRYK2cWj7z36Cfw#/registration. Please contact Thomas Hart,…
The Caregivers Only group offers a time to talk about all the issues caregivers face in a non-judgmental, accepting atmosphere without their loved one, who is living with ALS, being present. Caregivers share a common experience; life has become so tumultuous that they often feel exhausted and overwhelmed, hungry for emotional comfort. Together, with the…
Join us for an insightful update on the Himalaya Trial presented by Nazem Atassi and Merit Cudkowicz. During this webinar, Dr. Atassi and Dr. Cudkowicz will present the results of the Phase 2 trial in ALS and answer questions. Don't miss this opportunity to learn about the latest developments in ALS research from leading experts…
Namita Goyal, MD Dr. Namita Goyal is the director of the UCI Health ALS & Neuromuscular Center. With support from the axeALS Foundation and the Sean M. Healey & AMG Center for ALS at Mass General, Dr. Goyal led efforts to establish an EAP program at UCI Health in September 2023. Amanda Stevens Amanda and…
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.
Share Your Experience and ALS Advance Research – Join the ARC Study Led by Alan Premasiri, Sr. Manager, Clinical Operations at ALS TDI Thursday, August 1, 2024 | 3:00 - 4:00pm EDT Join us for a virtual discussion about the ALS Research Collaborative (ARC) study! This innovative research initiative allows people with ALS to share their unique…
Wednesday, July 31st, 2024 4:00 - 5:00 PM ET Webinar II of the Respiratory Care in ALS webinar series presented by the NEALS Respiratory Care and Ventilation Committee. Advances in Cough and Secretion Management in ALS, will focus on use of the validated Oral Secretion Scale (OSS) for predicting tolerance of noninvasive ventilation and management of secretions. Indications…
Please join us on Thursday, July 25th, 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, PhD, will present updates on the Platform Trial, share ways to stay connected to news in ALS research, and answer questions from the audience. This week, we will shine a…
About the Program Join us for our July ALS Learning Series where we will share information about work being done in the areas of inclusion and education in relation to ALS Clinical Research. We will highlight the Northeast ALS Consortium (NEALS) Clinical Research Learning Institute (CRLI) Research Ambassador Program, Community Education Webinars hosted by NEALS,…
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.
An open, supportive monthly bereavement group for anyone (family, friend, etc.) who has lost a loved one to ALS within the past year. This group will provide a place to connect with others who have experienced the loss of a loved one to ALS; stories will be told, feelings will be explored, and information will…
The Caregivers Only group offers a time to talk about all the issues caregivers face in a non-judgmental, accepting atmosphere without their loved one, who is living with ALS, being present. Caregivers share a common experience; life has become so tumultuous that they often feel exhausted and overwhelmed, hungry for emotional comfort. Together, with the…
The Caregivers Only group offers a time to talk about all the issues caregivers face in a non-judgmental, accepting atmosphere without their loved one, who is living with ALS, being present. Caregivers share a common experience; life has become so tumultuous that they often feel exhausted and overwhelmed, hungry for emotional comfort. Together, with the…
Meets the Third Tuesday of each month from 1 – 2:30pm Facilitator: Anne Lidsky, PhD Visit: https://lesturnerals.org/support-services/support-groups-education/ to sign up. *Meetings will be held over Zoom and a Zoom invitation will be sent via email once you register for the group.*
As part of our community webinar series, we will dedicate one Thursday each month to a discussion about Expanded Access and Expanded Access Protocols (EAPs). Please join us on Thursday, July 11th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session featuring guest speakers from our EAP Patient Advisory Committee.
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.
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. Wednesday, June 26th, 4:00 PM Pacific Standard Time…
Tuesday, June 25th, 2024 4:30 - 5:30 PM ET Genetic counselors Lauren Lichten and Laynie Dratch will describe the genetics of ALS, why genetic counseling and testing may be of value to a family impacted by ALS, and what to expect from the process. They will be joined by genetic counselor Jennifer Roggenbuck and Dr.…
