MGH Neurology

11/21/2025

Two weeks to go until the MND Association Symposium on ALS/MND. On Saturday, December 6th, there will be a primary lateral sclerosis (PLS) session, where Dr. Hande Özdinler will present her research on PLS.

Learn about the symposium schedule here: https://symposium.mndassociation.org

11/18/2025

ALS/MND Natural History Study Reaches 4,000 Participants!


The ALS/MND Natural History Consortium is excited to announce a major milestone: with the recent addition of data from Hadassah Medical Center in Jerusalem, Israel, the study now includes over 4,000 participants worldwide.

The Consortium is an international collaboration of 17 sites across the U.S., Europe, and Israel, united by a shared mission to advance ALS/MND research. For over 10 years, we have been building one of the most comprehensive natural history datasets and research infrastructure to accelerate progress toward effective therapies.

This multidisciplinary, clinic-based registry prospectively and longitudinally captures critical clinical information about ALS/MND, helping researchers better understand the disease process and accelerate the search for effective treatments.

"Every participant represents a vital piece of the ALS/MND puzzle. Crossing the 4,000 mark reflects the power of global collaboration and the commitment of patients, clinicians, and researchers to advance knowledge and improve lives."
— Alexander Sherman, Principal Investigator, ALS/MND Natural History Consortium

The Consortium is actively recruiting additional sites worldwide to expand its reach and strengthen the global fight against ALS/MND.

📸 Group photo from the Consortium’s Annual Meeting in Clearwater, FL, October.

Learn more: https://www.data4cures.org/natural-history-consortium

11/17/2025

Please join us on Thursday, November 20th, at 5:00 pm ET for a brief presentation and Q&A session on the HEALEY ALS Platform Trial featuring Dr. Sabrina Paganoni of Mass General Hospital.

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

11/15/2025

Recently, investigators from Mass General Brigham and Harvard John A. Paulson School of Engineering and Applied Sciences have been working on an inflatable, wearable shoulder robot. The device is designed to provide personalized movement assistance for people with upper-limb impairment.

"Ultimately," Dr. Sabrina Paganoni says, "we want to have a tool that's highly customized and personalized to fit the needs of people living with ALS, stroke, or other neurological conditions and can be deployed in the patient's home so that they can actually use it in their daily life."

Check out the article here: https://advances.massgeneral.org/neuro/article.aspx?id=1610

Harvard Biodesign Lab

A wearable shoulder robot under development aims to improve movement quality and reduce effort for patients with ALS, stroke, or other neurologic conditions.

11/14/2025

On December 6th, at the MND Association International Symposium on ALS/MND, there will be a session dedicated to primary lateral sclerosis (PLS). In this video, Dr. Hiroshi Mitsumoto, one of the session's speakers, provides a brief overview of the history of PLS research.

Learn more about the symposium here: https://symposium.mndassociation.org

11/14/2025

Dr. Lori Chibnik, biostatistician at the Healey & AMG Center for ALS, recently joined one of our community webinars on decoding HEALEY ALS Platform Trial publications. She explained strategies for reading these papers and how to interpret data and findings from scientific publications.

Missed the webinar? Watch the recording here: https://www.youtube.com/watch?v=BaQopBHkjwk

11/13/2025

The Sean M. Healey & AMG Center for ALS is pleased to share that they have contracted with Inflammasome Therapeutics to design a new Healey ALS MyMatch trial evaluating Kamuvudine-9 (K9) in people with ALS.

Read the announcement: https://www.massgeneral.org/neurology/als/news/healey-center-announces-design-with-inflammasome-therapeutics

11/11/2025

11/11/2025

The ALS clinical trial landscape continues to grow and evolve. How can research sites adapt?

ALS site managers across four research sites in the US collaborated to develop strategies to support clinical research sites. Their conversation included:

▪️Recognizing common challenges
▪️Acknowledging the importance of experienced site personnel
▪️Discussing a centralized organizational approach as a way to improve site performance

In the future, initiatives should focus on refining strategies and reporting metrics to measure efficiency and ensure financial sustainability.

Learn more about their discussion here: https://onlinelibrary.wiley.com/doi/10.1002/mus.70054




American Association of Neuromuscular & Electrodiagnostic Medicine - AANEM

11/10/2025

Please join us on Thursday, November 13th, at 5:00 pm ET for a brief presentation and Q&A session on Expanded Access Protocols (EAPs) featuring Dr. Sabrina Paganoni of Mass General Hospital.

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

11/07/2025

Stay connected to the Healey & AMG Center for ALS.

Sign up for the ALS Link to receive email updates on webinars, news and research: https://lp.constantcontactpages.com/sl/wQfOqgA/ALSLink

Share this link with your community to help spread the word!