Her Death Led to Awareness of Rare Disease
Chuck Mohan founded the United Mitochondrial Disease Foundation to honor the memory of his late daughter and raise awareness for a disease few understand.
Chuck Mohan and his wife were forced to endure watching their sweet daughter, a girl who liked to dance and enjoyed every moment of life, completely lose her ability to function.
Gina suffered from mitochondrial disease. Mitochondrial disease is a group of disorders caused by dysfunctional mitochondria, which are the "organelles," or the part of a living cell that generate energy for the cell. It has no cure.
Chuck gives his emotional account of the day that he realized his daughter's disease was not going away.
Gina passed away at 15. For her parents it was heartbreaking. Their daughter would not go to college. She would never start a career. And her father would never dance with her at her wedding.
Soon after she died, Chuck began his mission to raise awareness for a disorder many don't know about or understand. In 1996, he founded the United Mitochondrial Disease Foundation. He still serves as Chairman Emeritus, and leads the Pittsburgh chapter. Through events and donations, UMDF has become one of the non-government funded leaders in mitochondrial disease in the country.
Chuck continues to be motivated by the last words his daughter spoke to him. As he remembers it, Gina pulled her him close and begged him to never lose her. Thanks to the United Mitochondrial Disease Foundation , not only has Chuck never lost the memory of his beloved daughter, but her spirit will live forever and spark hope for others with this disease.