Chuck Mohan

It's not so hard to imagine your daughter is a happy, healthy ten-year-old; but what would you do if suddenly and inexplicably your child was stricken with uncontrollable seizures? Instantly, your vital honor roll student is translated from her carefree, elementary world to a cold, clinical one of medical testing, countless hospitals, and unknown doctors. That is something none of us want to imagine, let alone realize personally. Sadly, this is the story of Charles and Adrian Mohan and their daughter Gina of Plum borough. For three years, Gina's seizure condition was treated using numerous anti-convulsive drugs, but to no avail. Eight months after finally receiving the diagnosis of Mitochondrial Disease, Gina died at age 15.

Mitochondrial Disease is an energy depleting disease that is often misdiagnosed. Mitochondria are organelles in every cell of the body that are responsible for producing the body's energy. Defects in these organelles basically shut down the energy flow to the rest of the body creating brain impairments, dulled vision, and muscles spasms. It can become as serious as a weakening of the heart and the inability to eat and digest food. Clearly, the results are fatal.

Since his daughter's death in 1995, Chuck has been one the biggest advocates for research and education about this disorder. Rather than becoming immobilized by his tragedy, Chuck and his family have overcome by, as he says, "Redefining Hope." For him, this redefinition has taken the form of volunteering for the United Mitochondrial Foundation (UMDF) in Plum. In fact, for the past seven years, he's served as chairman of the organization. The mission of the foundation is to support research for cures and treatments, and Chuck has jumped in with both feet to see the research forward and to help others facing similar trials.

One facet of this research works to bring families together by sharing individuals' information. Through Chuck's initiative to create a questionnaire, the UMDF has compiled specific scientific data into a book that is distributed to effected families. "We want to give parents the tools to deal with the disease. When they are faced with this they feel hopeless. We want to empower the parents and talk about how we can be proactive."

The foundation is actively working to raise money to continue funding this potentially life-saving research. Through donations and fundraisers such as car shows, this can be accomplished.

It's surprising to realize that all Chuck does for this organization is purely volunteer. His day job is running his family's two restaurants, one which has been in the family since 1963. He is also the diving coach at Gateway High School. But Chuck put it into perspective when he said, "The restaurants make a living for be, but it is the volunteering to fight this disease that makes a Life."

For more information on the UMDF, visit their website at http://www.umdf.org, and you can watch the video interview with Chuck Mohan.