Massachusetts proclaims Sept. 15 Myotonic Dystrophy Day

Massachusetts marked Sept. 15, 2026, as Myotonic Dystrophy Day after advocacy from a Somerville resident living with the disease helped drive city, town and state recognition. The move is meant to raise awareness, support research and strengthen policy attention for people with myotonic dystrophy and their caregivers.

Why it matters: - Massachusetts’ proclamation puts a rare genetic disease in front of state leaders, local governments and the public. - The recognition is meant to boost awareness, research, biopharmaceutical innovation and support for people living with myotonic dystrophy and their caregivers. - Myotonic dystrophy can affect muscles, the heart, breathing, digestion, sleep, vision and cognition. - Diagnosis is often delayed, and there are no DM-specific treatments approved by the U.S. Food and Drug Administration.

What happened: - The Commonwealth of Massachusetts proclaimed Sept. 15, 2026, as Myotonic Dystrophy Day. - Governor Maura T. Healey, Lt. Gov. Kimberley Driscoll and Secretary of the Commonwealth William Francis Galvin signed the proclamation. - The proclamation followed advocacy from Jim Dolan, a Somerville resident with DM1 who facilitates the Myotonic Dystrophy Foundation’s Affected Men's Support Group. - Dolan was diagnosed with DM1 in 2022 after nearly 20 years of misdiagnosis. - Somerville City Council approved a resolution on Sept. 10, sponsored by Ward 1 City Councillor Matt McLaughlin and signed by Mayor Jake Wilson. - Amherst Town Council also issued a proclamation, sponsored by District 5 Councilor Ana Devlin-Gauthier and signed by Council President Mandi Jo Hanneke. - TD Garden was illuminated green three days after the Somerville gathering. - Dolan and other community members met on Sept. 14 in the Massachusetts House Chamber with State Sen. Patricia D. Jehlen and State Rep. Mike Connolly. - Boston City Hall Plaza will also be illuminated green on Sept. 15.

The details: - The state proclamation aligns with International Myotonic Dystrophy Awareness Day, observed annually on Sept. 15. - The proclamation supports education, research, biopharmaceutical innovation and policies that assist people living with DM and their caregivers. - Dolan shared his experience in an MDF advocacy webinar and encouraged others to contact local and state officials. - Massachusetts has biotechnology companies, hospitals and academic medical centers that contribute to DM research and care. - That ecosystem supports jobs for scientists, clinicians, research staff and other professionals across the Commonwealth. - The Myotonic Dystrophy Foundation is the leading global advocate for people living with myotonic dystrophy. - MDF says it strengthens the DM community through support, care, advocacy and research aimed at treatments and a cure.

Between the lines: - The sequence of city, town and state actions shows how one patient advocate can move an issue from personal experience to public policy. - Local lighting campaigns and chamber meetings give the disease visibility beyond a formal proclamation. - The effort also ties public awareness to Massachusetts’ life sciences identity, which could help connect patient advocacy with research and care networks.

What's next: - Community members can use MDF’s Proclamation Toolkit to seek similar recognition from their own state or local governments. - Awareness efforts are expected to continue around International Myotonic Dystrophy Awareness Day each Sept. 15. - Massachusetts leaders and patient advocates may build on the proclamations to push for more research attention and better support policies.

The bottom line: - Massachusetts used Sept. 15 to elevate a little-known genetic disease and signal support for families, caregivers and future treatment efforts.