State proclamation follows advocacy by Somerville resident Jim Dolan and a week of local recognition across Massachusetts
SOMERVILLE, MA, UNITED STATES, September 15, 2026 /EINPresswire.com/ — The Commonwealth of Massachusetts has proclaimed September 15, 2026, Myotonic Dystrophy Day, recognizing the impact of this rare, inherited disease and supporting greater awareness, medical research, and assistance for people living with myotonic dystrophy (DM) and their caregivers.
The proclamation was signed by Governor Maura T. Healey, Lieutenant Governor Kimberley Driscoll, and Secretary of the Commonwealth William Francis Galvin. It recognizes the seriousness of DM and supports the goals of International Myotonic Dystrophy Awareness Day, including education, research, biopharmaceutical innovation, and policies that assist people living with DM and their caregivers.
The statewide recognition follows outreach by Jim Dolan, a Somerville resident who lives with DM1 and facilitates the Myotonic Dystrophy Foundation’s (MDF) Affected Men’s Support Group. Dolan was diagnosed with DM1 in 2022 after nearly 20 years of misdiagnosis. After connecting with MDF and the DM community, he began working to increase awareness in Massachusetts. He later shared his experience as a panelist in an MDF advocacy webinar, encouraging others to contact their own local and state officials.
What began with Dolan’s outreach grew into several days of public recognition across Massachusetts. On Sept. 10, the Somerville City Council approved a resolution sponsored by Ward 1 City Councillor Matt McLaughlin and signed by Mayor Jake Wilson. Both officials spoke at a City Hall gathering with members of the DM community. Local recognition also extended west to Amherst, where advocacy by resident Jane Mairs helped secure an Amherst Town Council proclamation sponsored by District 5 Councilor Ana Devlin-Gauthier and signed by Council President Mandi Jo Hanneke. Three days after the Somerville gathering, TD Garden, home of the Boston Celtics and Boston Bruins, was illuminated green. On Sept. 14, Dolan and other DM community members met in the Massachusetts House Chamber with State Senator Patricia D. Jehlen and State Representative Mike Connolly, sponsors of a joint resolution before the Massachusetts General Court recognizing Myotonic Dystrophy Awareness Day. Boston City Hall Plaza will also be illuminated green on Sept. 15.
“When I first heard about International Myotonic Dystrophy Awareness Day, I assumed Massachusetts already had plans,” said Dolan. “I learned that one email can open the door. What seemed difficult came together much faster than I expected. My message to others is simple: send the email. The worst thing they can say is no, but yes is just as likely.”
Myotonic dystrophy is a progressive, multisystemic genetic disease that can affect muscles, the heart, breathing, digestion, sleep, vision, cognition, and other body systems. Symptoms vary widely, even within families. Diagnosis is often delayed, and there are currently no DM-specific treatments approved by the U.S. Food and Drug Administration.
Massachusetts is also home to biotechnology companies, hospitals, and academic medical centers contributing to DM research and care. This work supports jobs for scientists, clinicians, research staff, and other professionals across the Commonwealth while helping advance potential treatments.
“Jim’s persistence brought the DM community together with local and state leaders and created meaningful visibility across Massachusetts,” said Tanya Stevenson, EdD, MPH, CEO of the Myotonic Dystrophy Foundation (MDF). “These proclamations will help more people recognize DM while strengthening relationships with leaders who can improve care, support research, and help prepare for future treatments.”
International Myotonic Dystrophy Awareness Day is observed annually on September 15. Learn more at myotonic.org/international-dm-day.
Community members interested in requesting recognition from their own state or local government can use MDF’s Proclamation Toolkit.
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About the Myotonic Dystrophy Foundation
The Myotonic Dystrophy Foundation (MDF) is the leading global advocate for people living with myotonic dystrophy. MDF strengthens the DM community through support, care, advocacy, and research that brings us closer to treatments and a cure. Learn more at myotonic.org.
Kleed Cumming
Myotonic Dystrophy Foundation (MDF)
+1 415-800-7777
email us here
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