MGH Neurology

02/23/2026

Please join us on Thursday, 2/26, at 5:00 pm ET for a community Q&A webinar. This week, Drs. James Berry and Jenny Wang of Massachusetts General Hospital will lead a discussion on Neurofilament Light Chain (NfL) analysis in ALS research and how it applies to the HEALEY ALS Platform Trial.

Register:
https://mgb-org.zoom.us/webinar/register/WN_JW9rQBhTRFW5uoUIDtJguw #/registration



Northeast ALS Consortium (NEALS) ALS ONE I AM ALS EverythingALS Les Turner ALS Foundation Muscular Dystrophy Association ALS TDI The ALS Association

02/20/2026

The Healey & AMG Center for ALS recently sent out their winter newsletter. Check it out to learn more about research, publications, announcements, and more.

Read more here: https://conta.cc/3ObE2Ml

Email from Massachusetts General Hospital Winter 2026 Newsletter   Sean M. Healey & AMG Center for ALS Winter 2026 Newsletter View our website   Dear friends, Thanks to your unwavering support, 2025 w

02/18/2026

At the MND Association International Symposium on ALS/MND in December, Michelle Redenz, a nurse at the Healey & AMG Center, shared a poster on the Acceleration Centers of Enrollment (ACE) program.

The goal of the ACE program is to increase enrollment and access to ALS clinical trials. We are thankful to all supporters and participating sites for making this program possible!

Learn more about the launch of ACE: https://www.massgeneral.org/neurology/als/news/healeyamg-northwestern-launch-ace-initiative

02/09/2026

Please join us on Thursday, 2/12, at 5:00 pm ET for an expanded access discussion featuring James Berry, MD, MPH and representatives from Rapa Therapeutics. They will provide an update on the RAPA-501 EAP, which has completed its enrollment goals.

Register:
https://mgb-org.zoom.us/webinar/register/WN_JW9rQBhTRFW5uoUIDtJguw #/registration



Northeast ALS Consortium (NEALS) ALS ONE I AM ALS EverythingALS Les Turner ALS Foundation Muscular Dystrophy Association ALS TDI The ALS Association

02/09/2026

In this paper, findings provide strong evidence that dipeptide repeat proteins (DPRs), rather than repeat RNA, are a major driver of C9ORF72-associated ALS and FTD. This work improves researchers’ understanding of how this genetic mutation causes disease and highlights DPRs as a promising target for future therapeutic strategies.

Read the abstract: https://www.science.org/doi/10.1126/science.adv2600

Science

GGGGCC (G4C2) repeat expansion in C9ORF72 is the most common genetic cause of amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). Toxicity is thought to result from the accumulation of either repeat RNAs and/or dipeptide repeat ...

02/05/2026

What’s the latest on ALS research and clinical trials?

Read this article that provides an overview of ALS research at the Healey & AMG Center: https://www.massgeneralbrigham.org/en/about/newsroom/articles/whats-the-latest-on-als-research-and-clinical-trials

Get the latest information on important progress in ALS research. Learn how to enroll in ALS clinical trials at Mass General Brigham.

02/03/2026

Interested in staying connected to the Healey & AMG Center for ALS?

Sign up for the ALS Link to receive updates about upcoming webinars, news, and research. Click here to sign up: https://lp.constantcontactpages.com/sl/wQfOqgA/ALSLink

Help spread the word and share this link with your network!

01/29/2026

The Healey & AMG Center for ALS is excited to share our 2025 Year in Review. Learn about our progress in ALS therapy development, center innovations, team accomplishments, and vision for 2026. We would like to thank every member of our community who has helped ensure that we continue to advance research in ALS. Progress in 2025 would not have been possible without your commitment to our mission.

Read here: https://publuu.com/flip-book/121892/2332553

Online Flipbook created with Publuu Flipbook Maker.

01/27/2026

In this study, researchers analyzed data from wrist-worn devices during exercises performed by people living with ALS.

They found that 3 out of 4 exercises demonstrated significant association with ALSFRS-R outcomes, which are used to evaluate ALS progression. These results suggest that prescribed exercise may be able to help track disease progression, and does not require wearing a device for an extended period of time.

Read more here: https://link.springer.com/article/10.1186/s12984-025-01829-z

Background Digital health technologies (DHTs) can quantify movements in daily routines but rely heavily on participant adherence over prolonged wear times. Methods We analyzed accelerometry data from wrist-worn devices during short at-home episodes of prescribed exercises performed by 329 individual...

01/23/2026

At the MND Association International Symposium on ALS/MND in December, researchers gathered to share findings on primary lateral sclerosis (PLS).

Check out this blog to learn more about the session and presentations: https://mndresearch.blog/2026/01/22/bringing-primary-lateral-sclerosis-into-the-spotlight-at-the-36th-international-symposium/

Reading Time: 5 minutesPrimary Lateral Sclerosis (PLS) is a type of MND that progress slowly over many years. It is estimated that around 3 in 100 people diagnosed

01/22/2026

How can researchers use statistics in clinical trials?

This article highlights Bayesian methods, an approach researchers use in the HEALEY ALS Platform Trial. This approach allows researchers to use previous data to inform clinical trials, while in the traditional approach, researchers must start over with every new trial.

“It sounds so intuitive to just use the data that you have before to inform the next thing that you do,” said Merit Cudkowicz, a neurologist at Massachusetts General Hospital who runs a major ALS clinical trial, “instead of just having this sort of amnesia.”

The Bayesian method can lead to faster trials, such as the HEALEY ALS Platform Trial.

“The Bayesian approach is just trying to take all of that data that participants give — and they give a lot of themselves — and use it in the most effective way,” said Melanie Quintana, a statistician at Berry Consultants, who helped design the HEALEY trials.

Read more: https://www.yahoo.com/news/articles/one-weird-thing-holding-drug-133000392.html

What if researchers didn't have to start from scratch every time?

01/20/2026

Please join us on Thursday, 1/22, at 5:00 pm ET for a research access and patient navigation discussion and Q&A session with Catherine Small and Judi Carey, RN from the Healey & AMG Center for ALS.

Register: https://mgb-org.zoom.us/webinar/register/WN_JW9rQBhTRFW5uoUIDtJguw #/registration



Northeast ALS Consortium (NEALS) ALS ONE I AM ALS EverythingALS Les Turner ALS Foundation Muscular Dystrophy Association ALS TDI The ALS Association