These webinars and recorded symposium presentations are designed to complement our other patient education materials.
Platform Trial Update: July 7, 2020
Healey Center faculty provide updates on the status of the HEALEY ALS Platform Trial.
COVID-19 and ALS at Mass General: An Informational Webinar
On April 24, the ALS multidisciplinary team at Mass General reviewed what we know about COVID-19, and provided information about how we have reshaped our MGH clinic community to respond to the COVID-19 outbreak.
HEALEY ALS Platform Trial Patient Webinar
We hosted a webinar on April 8th to discuss the current state of planning for the HEALEY ALS clinical trial, featuring panelist Reagan Healey, who brought a message for us and for ALS patients and caregivers everywhere:
"I am really glad we could update you today and let you know of our neverending commitment you and your families.
I am in New York and every night this month at 7 pm the city erupts with cheering, drum pounding and clapping to thank our Healthcare professionals and all frontline workers during this Corona Crisis. It can be heard as a low rumble if you’re inside and then a thunderous chorus when you open a window.
But I am going to let you in on a secret: I scream and cheer for you all and for my brother Sean. And I want you to know that Sean and the Healey Center are and will continue to be the strongest voices on your behalf. We will put an end to the ALS crisis." – Regan Healey
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.
Previous Webinars from the After Lunch Series
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 series of educational webinars produced by the Northeast ALS Consortium (NEALS).
- May 6, 2020 - ALS Clinical Research Learning Institutes: Empowering People with ALS to be Research Ambassadors
- April 24, 2020 - Update #2: Impact of COVID-19 on ALS Clinical Research
- March 27, 2020 - The Impact of COVID-19 on ALS Clinical Research
- March 10, 2020 - Simplifying the Search: How to Find the Right ALS Clinical Trial for You
- March 9, 2020 - Research and Support for Young Caregivers and Families Affected by ALS
- 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
NEALS Webinars from Prior Years
- 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
- January 30, 2018 - Fortitude ALS - A Phase 2 study of CK107 to treat respiratory and motor function in ALS
- January 10, 2019 - The Trach Decision from an ALS Patient’s Perspective
- 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