MGH Neurology

Please join us on Thursday, 6/25, at 5:00 pm ET for a community Q&A webinar. This week, Sabrina Paganoni, MD, PhD, of Massachusetts General Hospital and Michael Weiss, MD, of the University of Washington, will present updates on the HEALEY ALS Platform Trial.

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



Network of Excellence for ALS - NEALS ALS ONE I AM ALS EverythingALS Les Turner ALS Foundation Muscular Dystrophy Association ALS TDI The ALS Association North Star ALS

Dr. Suma Babu recently joined Dr. Ryan Jacobson of Rush University on an ANA Investigates podcast.

They discussed Healey ALS MyMatch, the hope it brings to ALS drug development, and latest updates.

Listen to the podcast here: https://sites.libsyn.com/203825/site/ana-investigates-als-research-and-the-healey-alsmymatch

American Neurological Association

ANA Investigates: ANA investigates ALS Research and Healey ALS MyMatch  In this episode, we will focus on the latest in the research on ALS. ALS remains a devastating disease, but the field is now at an inflection point with a growing pipeline of precision therapies, trial-ready sites, and a new generation of clinician scientists - yet barriers persist. There is dise...

Tofersen is a therapy used for treating people living with SOD1 ALS. Before tofersen was an FDA approved drug, it was available through an expanded access protocol (EAP) at Mass General Brigham.

This EAP shows that early access to complex gene-directed therapies can be delivered safely and efficiently in ALS care. The study also provides guidance to clinicians on safety monitoring and operationalizing such research protocols while integrating into ALS clinical care.

Learn more about the clinical and operational experience of this EAP: https://onlinelibrary.wiley.com/doi/10.1002/mus.70310

Optimizing Research Operations and Resource Utilization in ALS Care: Insights From the Tofersen Antisense Oligonucleotide Expanded Access Protocol Introduction/Aims Tofersen is a gene-targeted therapy for individuals with superoxide dismutase 1 (SOD1) (+) amyotrophic lateral sclerosis (ALS). Prior to U.S. Food and Drug Administration (FDA) app...

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!

New ALS therapy shows researchers "this illness can be stopped" A new drug, called tofersen, can radically slow and even reverse the course of ALS.

Read the latest Healey & AMG Center newsletter on clinical trials and observational research: https://conta.cc/4wSdJMP

Learn more about research programs, clinical trial updates, publications, and awards.

Updates from the Sean M. Healey & AMG Center for ALS Email from Massachusetts General Hospital Spring 2026 Newsletter: Clinical Trials & Observational Research   Sean M. Healey & AMG Center for ALS Spring 2026 newsletter: Clinical trials & observational

This , we're asking Healey & AMG team members about the care they provide for people living with ALS. Learn more about Judi's role as a nurse.

"I’m Judi Carey, an ALS research access nurse at the Healey & AMG Center at Mass General Hospital. For nearly 10 years, I’ve had the privilege of helping people living with ALS and their loved ones learn about and access research opportunities. While the work can be challenging, it doesn’t come close to the strength and resilience our patients show every day. I love that nurses’ week happens during ALS Awareness Month – a meaningful reminder of the compassion and hope at the heart of this work. Shout out to all our research warriors and ALS RNs and NPs!"

Visit the Healey & AMG Center website to discover more: https://www.massgeneral.org/neurology/als

This , we asked Michael Slama, MD, PhD, to describe his role as a neuromuscular neurologist at the Healey & AMG Center for ALS.

Learn more about the center on our website: https://www.massgeneral.org/neurology/als