My Story…
After a 10 year hiatus, I'm running the Falmouth Road Race again! Wish me luck! : )
I’m proud to be running in support of the Sean M. Healey & AMG Center for ALS at Mass General Brigham—a place that is redefining what hope looks like for families living with this devastating disease.
ALS is relentless. It progressively takes away a person’s ability to move, speak, swallow, and eventually breathe—often within just 2–5 years of diagnosis. It doesn’t just impact one individual; it transforms the lives of entire families. There is still no cure.
The Healey Center is leading some of the most innovative ALS research in the world, including the groundbreaking Healey ALS Platform Trial, which is accelerating the path to new treatments. At the same time, they are caring for patients and families with extraordinary compassion—through multidisciplinary care, in-home visit programs, and support for children navigating a parent’s illness.
Every dollar helps drive research forward, expand access to experimental therapies, and ensure that families have the support they need through every stage of the disease.
I’m running these seven miles because I believe in a future where ALS is no longer a devastating diagnosis—and because that future depends on all of us.Thank you for being part of this mission. A BIG thank you to one of my besties- Jennifer DiMartino for all your work with patients, families and the ALS community. You are an inspiration!
Description
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
Recent donors
| Donation date | Donor name | Donation amount |
|---|---|---|
| Jun 22 | Michelle | $28.10 |