Agenda Summary
title
Proclaiming that September 15, 2026 is International Myotonic Dystrophy Awareness Day.
body
Official Text
Proclamation
Whereas: Myotonic dystrophy is a rare, inherited disease affecting approximately 1 in 2,100 people and more than 150,000 individuals in the United States; and
Whereas: Myotonic dystrophy is the most common form of adult-onset muscular dystrophy and can affect nearly every system of the body, causing complex symptoms involving the muscles, heart, lungs, digestive and hormonal systems, vision, speech, swallowing, sleep, and cognitive function; and
Whereas: The disease is caused by a mutation in the DMPK or CNBP gene, and individuals living with myotonic dystrophy have a 50 percent chance of passing the altered gene to their children; and
Whereas: Myotonic dystrophy can affect people of all ages, its symptoms vary widely, and the disease may become more severe with each generation; and
Whereas: Thousands of people may be living with myotonic dystrophy without knowing they have the disease, while misdiagnosis and delays in receiving an accurate diagnosis remain common; and
Whereas: There are currently no treatments approved by the U.S. Food and Drug Administration specifically for myotonic dystrophy, underscoring the urgent need for continued research, medical innovation, and support for affected individuals and their caregivers; and
Whereas: The Myotonic Dystrophy Foundation and advocates around the world are working to improve quality of life for people living with the disease, advance research, increase awareness, and accelerate the development of effective treatments and a cure; and
Whereas: International Myotonic Dystrophy Awareness Day provides an opportunity to promote greater understanding of the disease, affirm the dignity of those affected, support their families and caregivers, and encourage continued scientific and medical progress;
Now, therefore, I, Jake Wilson, Mayor of the City of Somerville, do hereby ...
Click here for full text