Help CHARLES raise money

All of us at the Sean M. Healey & AMG Center for ALS at Mass General Brigham (MGB) are extremely proud to be an official charity team in the Falmouth Road Race.

Our runners are taking on the seven miles of the Falmouth Road Race to help us stay up and running! The Sean M. Healey & AMG Center for ALS is a non-profit located under Mass General Brigham (EIN #04-3230035), and so many of the programs, services, and research initiatives that support individuals and families living with ALS rely heavily on philanthropic support from people like you. Every contribution - large or small - directly helps fuel compassionate individualized care, family support programs, groundbreaking research, and hope for a future without ALS.

What is ALS?
ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects the motor neurons in the brain and spinal cord that control voluntary muscle movement. As these motor neurons degenerate and die, individuals experience worsening muscle weakness, loss of mobility, difficulty speaking, swallowing, and eventually breathing. Most individuals diagnosed with ALS survive just 2–5 years after diagnosis, and there is currently no cure.

ALS devastates lives quickly and unpredictably, affecting not only the person diagnosed, but also the loved ones and caregivers who walk beside them every day. Your support helps provide hope, real help, and groundbreaking research - and means the world to all of us.

A few examples of programs and initiatives at the Healey Center for ALS that your donation impacts include:

GROUNDBREAKING ALS RESEARCH, such as:

• The Healey ALS Platform Trial - Launched in 2020, this renowned trial is a first-of-its-kind perpetual, multi-center, multi-regimen platform trial designed to test multiple investigational ALS treatments simultaneously. Renowned for its efficiency in reducing trial cost by 30%, decreasing the average length of the trials by 50%, increasing patient enrollment by 67%, and allowing faster identification of promising therapies, this trial is now on its 8th regimen.
• The Healey ALS MyMatch Initiative - Launched in 2025, this is the first early-phase, biomarker-driven ALS clinical trial program to optimize participant population matching and increase early therapy response signal detection. In just a year, the Healey ALS MyMatch initiative has grown from a nascent idea to a fully operational program with a robust portfolio of high industry engagement and strong pipeline of trials, rapid site expansion and historically high trial enrollment metrics. 

ACCESS TO EXPERIMENTAL STUDIES

• EAP’s – we are dedicated to developing effective treatments for ALS and to providing people with ALS access to experimental therapies through Expanded Access Protocol (EAP) programs.  ALS EAPs are a pathway for people with ALS to gain access to an investigational medical product when they are not eligible for a clinical trial. These investigational products are currently being studied, but not yet approved by the US FDA. Alongside traditional data, EAPs can also provide data that may be useful in developing new therapies.  We are proud to have built a dedicated team at the Healey Center to rapidly implement EAPs for people with ALS at Mass General Brigham and are working with several other research centers across the US.

MULTIDISCIPLINARY TEAM APPROACH

• Our multidisciplinary team cares for every aspect of the ALS journey. During clinic visits, patients and caregivers have access to numerous specialists and support services all in one place, allowing for comprehensive, personalized care while recognizing how valuable time and energy are for individuals and families living with ALS.

ALS PACT PROGRAM

• ALS impacts the entire family. We provide access to child psychologists on our ALS PACT Program (Parenting At a Challenging Time) team who are right here at Mass General Brigham.  They help families communicate with children - toddlers through young adults - and support their coping with ALS-related changes in a parent or grandparent.

ALS HOUSE CALL PROGRAM

• With ALS, it can be difficult to drive to Boston for many visits. Any person with ALS who lives in the eligible area may receive visits in their home (in addition to their clinic multidisciplinary visits!) by a Mass General Brigham ALS RN or NP through our ALS House Call Program, helping ensure continued access to specialized care and support.

Because the Healey Center for ALS is a non-profit organization, all donations are fully tax-deductible.

To donate to one of our runners or our team in general via your Donor Advised Fund or personal check, please email Jennifer DiMartino at jadimartino@mgb.org.

With immeasurable gratitude to The Falmouth Road Race, all of our runners, and to you and all who are so generously supporting our work by donating to support our work.

Visit the Healey Center at: Sean M. Healey and AMG Center for ALS

#EndALS #HealeyHope