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Sean M. Healey & AMG Center for ALS
Winter 2026 Newsletter
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Thanks to your unwavering support, 2025 was another year of remarkable progress for the Healey & AMG Center for ALS. I hope you will take a moment to look at our Year in Review and all we accomplished together.
We begin 2026 with exciting breakthroughs in understanding what causes some forms of ALS and frontotemporal dementia; a new investigational product enrolling in our HEALEY ALS Platform Trial; and updates on our first ALS MyMatch early-phase clinical trials.
I remain deeply optimistic about the promise ahead for individuals living with ALS. Knowing that you are joining us on this journey inspires everyone across the Healey & AMG Center and strengthens our resolve to find the cures.
Warmly,
Merit Cudkowicz, MD, MSc
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We are excited to share a report of the Healey & AMG Center's milestones from 2025.
Please read our Year in Review to learn about our progress in ALS therapy development, center innovations, team accomplishments, and vision for 2026. We thank every member of our community who helped ensure that we continue to advance research in ALS. Progress in 2025 would not have been possible without your commitment to our mission.
Thank you for a year of momentum, innovation, and progress.
| | Strategic Research Initiatives | | New Study Pinpoints Toxic Proteins as Primary Drivers of ALS and FTD | | | | Clotilde Lagier-Tourenne MD, PhD | | Emerging research from the Clotilde Lagier-Tourenne Lab, in collaboration with Franck Martin's Lab at the University of Strasbourg, sheds new light on how genetic mutations in the C9ORF72 gene cause ALS and frontotemporal dementia (FTD). Their cutting-edge discovery provides a road map to develop new therapies for C9ORF72 ALS and FTD. | | HEALEY ALS Platform Trial | | |
On March 19th, we will hold a community webinar with Neurizon Therapeutics to provide details about Regimen I and NUZ-001.
Register here
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The Healey ALS MyMatch program continues to gain exciting momentum with multiple early‑phase ALS clinical trials being planned for 2026 launch. We are deeply grateful to the MyMatch Patient Advisory Committee and to all the foundations and philanthropic supporters whose commitment and generosity continue to fuel and accelerate the MyMatch mission.
- ACACIA Trial (oral digoxin): On track for top‑line results in summer 2026.
- BANYAN Trial (monoclonal antibody, Treg pathway, nasal spray): In partnership with Tiziana LifeSciences. Enrollment expected in spring 2026.
- New Trials Ahead: Trial design under way for Kamivudine (K-9, NLRP3 inflammasome pathway, oral), in partnership with Inflammasome Therapeutics
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On April 2nd, Dr. Suma Babu will share an update on ALS MyMatch in a Healey & AMG Center community webinar. Register here.
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Everything ALS Webinar
On December 10, 2025, Dr. Suma Babu presented an overview of the Healey ALS MyMatch program and provided updates on the first trial.
Watch the recording
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Long-Term Tofersen in SOD1 Amyotrophic Lateral Sclerosis
Tofersen is the first and only approved therapy for the treatment of ALS in adults who have a variant in the SOD1 gene. In this long-term study, Healey & AMG researchers and collaborators found that participants with earlier initiation of tofersen exhibited less decline in function, strength, and risk of death-equivalent events.
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Pridopidine treatment in ALS: subgroup analyses from the HEALEY ALS Platform trial
Researchers conducted a subgroup analysis of pridopidine, an investigational therapeutic evaluated in Regimen D of the HEALEY ALS Platform Trial. This analysis suggests therapeutic benefits of pridopidine in people who have early ALS. These data informed the design of the global phase 3 trial of pridopidine, which is expected to start enrolling participants soon.
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Research Access
Our research programs are dedicated to advancing ALS science, uncovering its underlying causes, and ultimately discovering effective treatments for this disease. If you would like to learn more about how to stay connected to ALS research, please reach out to our research access nurses, Michelle Redenz or Judi Carey at mghalsresearch@mgb.org. You can also visit our clinical trials page here. We are deeply grateful to all past, current, and future participants who are helping to accelerate research and drive the search for life-saving therapies.
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Study Spotlights
Trial of COYA-302 Phase 2
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Science: Tregs which reduce inflammation are often present in fewer numbers in people with ALS. COYA 302 is a combination of interleukin-2 (IL-2) and a biosimilar candidate to abatacept. This investigational drug is expected to increase the function and number of Tregs while also directly reducing inflammation. Improving the efficacy of Tregs may reduce toxicity to the motor neurons and slow ALS progression.
Study of ElectricALS
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Purpose of Study: This study is being done to see how a device, the mScan, measures muscle changes over time in people living with ALS. This device uses Electrical Impedence Myography (EIM), which uses a very small, non-invasive (e.g. no needles), brief (about 6 seconds), and painless electrical current to measure the muscle tissue. We hope that this measurement can help with tracking disease progression and be used in the future to help understand how well treatments are working.
Clinical research webpage
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Upcoming Healey & AMG Center Webinars
Thursday, February 26th, 5:00 pm ET: Analyzing Neurofilament Light Chain (NfL) in ALS Research
Thursday, March 12th, 5:00 pm ET: Expanded Access Discussion
Thursday, March 19th, 5:00 pm ET: HEALEY ALS Platform Trial Regimen I Science
| | Let's Put ALS on Ice - Saturday, March 28, 2026 | The Bruins Alumni vs. The Blue Line Blues, a team inspired by the life of Jon C. Shepard (a frontline worker and avid goalie) and honoring law enforcement and families battling ALS will face off at this second annual event, taking place at the Boston Bruins practice facility, Warrior Ice Arena. Proceeds from the event will benefit the Healey & AMG Center. This event is open to the public. A $5 ticket (per person) includes a public family pregame skate with Bruins alumni. For more information, please reach out to Jamie Shepard at jshepard@iceals.org. | | Thanks to the incredible generosity of the Tackle ALS community, innovative research in repair and regeneration continues to accelerate and fuel breakthroughs that will bring us closer to restoring motor neuron health, protecting neuromuscular connections and ultimately transforming what it means to live with ALS. Tackle ALS has been critical to the early-stage findings of pioneering studies focused on: (1) Advancing a novel strategy to reduce toxic pTau in neurons and muscle, with early signs that it may restore healthy axon growth and strengthen nerve–muscle connections; (2) Uncovering how LINE‑1 activation in vulnerable motor neurons can guide the development of a precision biomarker to identify which patients are most likely to benefit from targeted therapies; and (3) Building a cutting‑edge graph‑neural‑network platform that pinpoints core ALS network failures and accelerates the discovery of drugs capable of restoring cellular health. Continued support of Tackle ALS will bring these discoveries to early‑phase, biomarker‑driven clinical trials, like the HEALEY ALS MyMatch program, designed to match individuals with ALS to therapies based on their unique disease biology. To support this research visit: TackleALS.com | | |
Building Platforms for Progress: Merit Cudkowicz on the Challenges—and Hope—of a Life in ALS Research
Dr. Cudkowicz, recipient of the 2025 AAN Lifetime Achievement Award for Clinically Relevant Research, discusses the influences and people who helped shape her leadership in ALS research and treatment.
| | Welcoming Jennifer DiMartino | |
| |  | We are excited to welcome Jen DiMartino to the Healey & AMG team leading ALS Patient, Family and Community Engagement. Jen has spent the last 10 years as the Executive Director of ALS ONE, a Massachusetts non-profit that funded many important ALS research initiatives at Mass General, UMass Medical, and ALS TDI, while also funding CCALS to ensure individuals living with ALS had the equipment and resources needed for the best quality of life. Over that decade, an incredibly supportive community of ALS-impacted individuals was organically built that was extremely special too – a space to feel included, understood, empowered, and comforted - no matter where they were on the ALS journey, whether they were living with the disease themselves, caring for a loved one currently living with it, or had lost a friend to the disease decades ago. The organization was founded by a close friend who was diagnosed with ALS at age 47 and lost his courageous and impactful journey just 7 months after the launch in 2016. It was Jen's utmost honor to carry his torch, raise over $21M for ALS ONE to fuel the ALS research and care pipeline, and be a support to so many. Jen is now so humbled to be an additional layer of support to the patients and families of the Healey & AMG Center, as well in helping the team here make the ALS journey for all a little smoother while working so hard on a cure.
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Updates on ALS from 2025
Recently, our Neurodegeneration Clinical Research Fellow, Dr. Pinar Uysal, presented an overview on the current state of ALS. Her discussion included updates on ALS diagnosis, treatment, and policy.
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Sean M. Healey International Prize for Innovation in ALS
Congratulations to the team of researchers who discovered that nucleotide-repeat expansions can cause ALS, revealing disease mechanisms and therapeutic targets. The team includes Nancy Bonini, PhD, Aaron Gitler, PhD, Rosa Rademaskers, PhD, and Bryan Traynor, MD, PhD, MMSc, FRCPI.
Read the announcement
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Drs. Ayeez and Shelena Lalji & Family ALS Endowed Award for Innovative Healing
Congratulations to Frank Bradke, PhD for deciphering the mechanisms underlying axon growth and to how tune them for regeneration.
Read the announcement
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Our work at the Sean M. Healey & AMG Center for ALS is accelerating therapeutic breakthroughs and improving the holistic care we deliver to our patients and their families. Your philanthropic support allows our clinicians and researchers to be nimble, pursuing the most promising research and care pathways that make a meaningful difference to individuals with ALS. Together, we will find the cures. 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/.
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Sean M. Healey & AMG Center for ALS.
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Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114
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