These webinars and recorded symposium presentations are designed to complement our other patient education materials.
After Lunch Series ALS Webinars
Demystifying Palliative Care
Mass General physician and researcher Kate Brizzi, MD, joins Hannah Zivalic, RN, and Judi Carey, RN, to discuss palliative care and its benefits for ALS patients. They also explore what happens during a palliative care visit, and explain the difference between palliative care and hospice.
Parenting at a Challenging Time: ALS PACT
PACT supports families as their children adjust to a parent’s ALS diagnosis, and helps parents meet their children’s practical and emotional needs.
Cals for pALS
People with ALS often have a hard time getting enough calories. Learn how you can make sure your body gets the nutrients you need.
Welcome to Our House: Tips and Tricks for Navigating Your Home
Nurses from the Healey Center for ALS at Mass General present tips to help you navigate your home safely, including ways to prevent falls and tools you can use to preserve independent living.
Learn about Radicava (Edaravone) an infusion medication that can slow ALS progression, including the research behind it and how it’s administered.
The G-Tube Talk
A presentation of patient options about the use of a gastrotomy tube (G-Tube, feeding tube).
On September 28, 2019, Dr. Merit Cudkowicz, Dr. James Berry, and Jen Scalia, NP hosted the annual Your Day: ALS Care and Research Symposium. The latest updates in ALS research and care were presented, followed by a Q&A panel discussion moderated by Merit Cudkowicz where Drs. James Berry, Sabrina Paganoni, Katie Nicholson, Archana Basu, Ghazaleh Sadri-Vakili and Jen Scalia, NP answered questions and addressed concerns from guests.
Mass General recommends the following educational webinars, produced by the Northeast ALS Consortium (NEALS):
- February 20, 2020 - ROADS to a better ALS outcome measure: the new Rasch-Built Overall ALS Disability Scale (ROADS)
- January 16, 2020 - REFINE-ALS: A Much Needed Biomarker Study of Edaravone (Radicava) in ALS
- January 9, 2020 - Palliative Care in the ALS Clinic
- December 12, 2019 - ALS Clinical Trials Pipeline, Winter 2019
- November 22, 2019 - I Just Took a DNA test - Turns Out I Don’t Have All the Answers
- November 13, 2019 - The Neuropathology of ALS: What Can We Learn?
- October 29, 2019 - Gene-targeted Therapeutics for ALS
- September 25, 2019 - Postcards from the Edge: Updates on Six Unusual ALS Patients
- August 9, 2019 - Accelerating Therapy Development and Expanding Access
- June 19, 2019 - The VA and ALS: An overview for veterans with ALS and clinicians
Earlier NEALS Webinars
- January 10, 2019 - The Trach Decision from an ALS Patient’s Perspective
- January 30, 2018 - Fortitude ALS - A Phase 2 study of CK107 to treat respiratory and motor function in ALS
- January 24, 2018 - Building future success through biomarkers
- January 10, 2018 - The Centaur trial - a phase 2 trial of AMX0035 for the treatment of ALS
- December 1, 2017 - Actemra Clinical Trial Update
- November 27, 2017 - Lazarus by Lunasin? Untangling an ALS X-File
- November 2, 2017 - Environmental Risk Factors for Amyotrophic Lateral Sclerosis
- October 19, 2017 - Power Wheelchairs - The Basics and Beyond
- August 17, 2017 - Advanced Imaging Tools for Accelerating Drug Development in ALS Neurons, featuring Nazem Atassi, MD
- August 10, 2017 - A Phase II Study in ALS of the Effects of Mexiletine on Hyperexcitability of Motor Neurons
- August 4, 2017 - Retigabine Clinical Trial Update & Discussion with ALS Patient and Advocate Stephen Winthrop
- July 13, 2017 - Exercise and ALS: A Discussion of Research and Practical Recommendations
- June 28, 2017 - Results from the Immunosuppression in ALS Trial
- May 22, 2017 - NEALS ALS Clinical Trial Pipeline Series Webinar Spring 2017