These webinars and recorded symposium presentations are designed to complement our other patient education materials.
Long-Term Survival of Participants in the CENTAUR Trial
Sabrina Paganoni, MD, PhD, and Merit Cudkowicz, MD, MSc presented a webinar with NEALS to discuss the ongoing results of the CENTAUR trial on Wednesday, October 21.
Platform Trial Update Webinar Series
Healey Center investigators hold weekly informal Q&A sessions about the HEALEY ALS Platform Trial, as well as monthly comprehensive updates.
Previous Platform Trial Webinars
- September 29, 2020: Merit Cudkowicz, MD, MSc, principal investigator, and Sabrina Paganoni, MD, co-principal investigator of the HEALEY ALS Platform Trial, provided an update on the progress of the HEALEY ALS Platform Trial. They were joined by Kuldip Dave, PhD, of the ALS Association.
- August 27, 2020: Initial post-launch update. Sabrina Paganoni, MD, co-principal investigator of the HEALEY ALS Platform Trial, joined Taner Dagdelen, co-founder and CEO of Unite Genomics, to discuss the latest updates on the trial.
- July 7: Update and preparation for launch. An overview of ways we have updated the trial protocols to remain safe during the COVID-19 outbreak, plus information on how to stay in touch and find a trial site near you.
COVID-19 and ALS at Mass General: An Informational Webinar
April 8 Webinar and Message from Reagan Healey
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).
Your Day: ALS Care and Research Symposium
On Saturday, November 7th 2020, Dr. Merit Cudkowicz, Dr. James Berry, and Jennifer Scalia, NP hosted the annual Your Day: ALS Care and Research Symposium. The latest updates in ALS research and care were presented by Drs. Merit Cudkowicz, James Berry, Sabrina Paganoni, and Suma Babu, with Sarah Luppino, NP and Jennifer Scalia, NP.
Other Videos & Webinars
Mass General also recommends videos from EverythingALS and the series of educational webinars produced by the Northeast ALS Consortium (NEALS), including:
- October 27 - ALS Nutrition App and Cooking Lessons
- September 23 - I AM ALS presents ALS Signal and PaCTD: Patient Centric Tools
- September 4 - Results of the CENTAUR Study: A Trial of AMX0035 for People With ALS