Family and friends gathered in Port Jefferson Station Sunday for a fundraiser to help a Long Islander with a rare disease.
Zeppieri was diagnosed 11 years ago with Neutral Lipid Storage Disease with Myopathy (NLSD-M), a rare genetic disease that impacts daily functions. Patients suffer from slow, irreversible debilitating symptoms. Muscles become fatty and develop weakness.
At 31 years old, Zeppieri is already having trouble walking and cannot pick up a glass of water with her right hand.
She told News 12 she is the only known case in the entire country.
"Being a patient of a rare disease, we feel alone, but when we know we are not alone, it keeps us fighting and moving forward," Zeppieri said. "It's definitely been a journey where I felt very alone but creating this foundation makes me feel not alone."
Zeppieri hopes to raise awareness and money because there is no cure or treatment for the disease.