About Me

I, Christine Piacentino, didn’t start as One Tough Mother.  They say life is a matter of moments and not milestones. Through life’s defining moments of being a mother with a child with Duchenne Muscular Dystrophy, I learned to persevere.  I developed the mental strength to find my voice. When my son Jonathan was diagnosed, I used my voice to help change the landscape for families dealing with Duchenne.  I dedicated 20 years of service to the board of directors for Parent Project Muscular Dystrophy.  Lobbied Congress to pass the first-ever legislation dedicated to Muscular Dystrophy called the MD Care Act and continue to lobby for annual appropriations for this legislation to the National Institutes of Health, the Center for Disease Control, and research by the Department of Defense, in looking out over the landscape and wanting to ensure that the families in Central and Western NY, I became a resource for families.   I was also instrumental in getting the Neuromuscular Clinic at the U of R approved, a certified Duchenne Care Center, which follows the gold standard of care for families dealing with Duchenne.  I also submitted testimony and spoke to an FDA advisory committee to obtain viable therapies for treating Duchenne MD.  I’m determined to make the lives of the families dealing with Duchenne a lot less scary, provide hope for the future, and provide the best quality of life I can for my son. There is still much work to do to extend the prognosis of this disease. Far too many Duchenne patients still pass away in their teens and early twenties. My experience navigating Duchenne also applies to helping other rare disease families. My future vision for “One Tough Mother” is to provide all families support in navigating living with a rare disease.