Duchenne muscular dystrophy (DMD) is a heartbreaker for the the 250,000 families worldwide whose sons are born with this debilitating, progressive disease.

It is rare, and yet the ripples of its effects in communities throughout the world are great. September 7, 2017 is World Duchenne Muscular Dystrophy Awareness Day and a time for all those affected by this fatal condition that currently has no cure.

The question is: “What can I do?” An answer comes from EndDuchenne.org, which is run by the Parent Project Muscular Dystrophy, a New Jersey-based organization that is determined to find successful treatment for this rare disease.

This year, End Duchenne launched a campaign to enlist the help of states around the U.S. to issue a proclamation supporting efforts to fund more research and heighten awareness for DMD. The site also provides a wealth of information and resources for families living with this disease.

The Parent Project was founded by Pat Furlong in 1994. Furlong’s two sons, Christopher and Patrick, were diagnosed with DMD 10 years earlier. Throughout their lives, she worked passionately to find meaningful treatment.

Although her sons did not survive to see their mother’s vision become reality, Furlong remains the driving force behind this worldwide initiative, connecting families with resources and continuing to fight for a cure.

How are you making a difference to raise awareness for DMD or other rare diseases? Share your stories with us at Patient Worthy!