Sean M. Healey & AMG Center for ALS

Spring 2024 Newsletter

From the Chief

Dear Friend of the Sean M. Healey & AMG Center for ALS,

I hope you are all feeling the hope and promise of spring. Here at the Sean M. Healey & AMG Center for ALS, we have a renewed sense of possibility as we look at our accomplishments in research and care over the past few months. 

As we also recognize that May is ALS Awareness Month, I want to once again thank you for all you do to raise awareness, advocate, participate in our clinical trials and provide the philanthropic support that allows us to make meaningful progress as we move closer to our goal of stop, repair and prevent.

Your steadfast commitment to our work inspires every one of us at the Healey & AMG Center. I hope you enjoy reading about the advances you make possible.

Warmly, 

Merit Cudkowicz, MD, MSc

New & Noteworthy

At the Healey & AMG Center for ALS, our patients are our priority. Our work is shaping the landscape of ALS treatment and understanding, and we are excited to share the latest news from our center with you. 

Expanding Access to Experimental Therapies

We are committed to ensuring individuals living with ALS across the U.S., who may not be eligible for clinical trials can access investigational products. Visit our new EAP webpages to learn more about Expanded Access. 

This month, we are excited to share that two new EAP programs for Pridopidine (Prilenia Therapeutics) and RAPA-501 (Rapa Therapeutics) have enrolled their first participants. These EAPs are part of the National Institutes of Health (NIH) – National Institute of Neurological Disorders and Stroke (NINDS)-sponsored EAPs, supported by the U.S. government’s Accelerating Access to Critical Therapies for ALS Act (ACT for ALS). 

Read More

Join us on Thursday, May 9 at 5 pm EST to hear from Shawn Sarbacker, Founder of TechVsALS, and Dr. Hristelina Ilieva during our weekly community webinar series.

Register 

New Partnerships

From the Bench

The Mass General Institute for Neurodegenerative Disease (MIND) is an open laboratory space where researchers focusing on a particular neurodegenerative disease – Alzheimer’s, Parkinson’s or ALS – share ideas and find common connections, accelerating discoveries and therapeutic development across all of these diseases.

This month, we visit the lab of Ghazaleh Sadri-Vakili, MS, PhD, as she and her team focus on identifying common mechanisms that cause neurodegenerative diseases. 

Read More

Recent Publications

The dedicated efforts of physicians and researchers at the Healey & AMG Center have led to significant breakthroughs in the fight against ALS. Publications are the result of rigorous investigation and research that offer valuable insights into the nature of this disease.

See the full list of publications on our website 

In The Community

"We're starting to talk about return of function, not just slowing down the illness, but can we actually stop this illness and can we help people regain function; those are words never used before in ALS."

-Dr. Merit Cudkowicz on "Nothing Left Unsaid"

Patient Voices

Healey & AMG Center patient, Tim Green's "Nothing Left Unsaid" is a weekly podcast hosted by Tim and Troy Green. Tim is a former first-round NFL draft pick, member of the College Football Hall of Fame, New York Times #1 Best Selling Author, former Fox broadcaster, NPR contributor, family man, ALS advocate, and so much more.  

Listen as the remarkable Dr. Cudkowicz speaks on her groundbreaking insights into the world of neurology and neuroscience. 

Listen wherever you get your podcasts

Impact of Philanthropy

Our work at the Sean M. Healey & AMG Center for ALS combines outstanding, multidisciplinary care with clinical and basic research informed by the needs of our patients. Philanthropy allows us to accelerate the pace of discovery and make a meaningful difference to our patients and their families. Your support helps to fuel breakthroughs and discoveries in the field of ALS and ensure everyone with ALS can access effective treatments and therapies We are determined to find the cures and we are confident your partnership will get us there. Thank you for your consideration.

If you have questions or would like to learn more about how you can support the Sean M. Healey & AMG Center for ALS, please contact Emily Monteiro at emonteiro7@mgh.harvard.edu or visit https://www.massgeneral.org/neurology/als/support/.