Health & Wellness

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.

How can you start something good?
The Conversation
More stories you may love

How Saving A Church Is Saving Lives Too

A couple bought an abandoned church and turned it into a community center. What they've created is so much bigger.

They're Saluting Our Veterans Every Day of the Year

Meet the Pittsburghers who are making sure our returning vets have jobs, homes and food, and find out how you can help.

How Goats And The Volunteers Who Love Them Are Saving A Popular Park

They're keeping invasive plants from taking over Pittsburgh's Frick Park by doing what comes naturally. For the goats at least!

Our Mission
Have you ever felt like there's just too much bad news? Ever felt like the world is hopeless, and you're helpless to do anything about it? We did too. That's why we created Sparkt™.
At Sparkt™, we tell powerful stories about great people making a difference in their communities, and we show you how you can make a difference too. Join us, and together, let's #StartSomethingGood!
Sparkt Newsletter
Get positive, uplifting stories in your inbox
Follow Us on Social Media
Download the Mobile App
Sparkt™ is a Rabble Holdings, Inc. Media Brand. © 2020 Rabble Holdings, Inc. All Rights Reserved.