22 Community News
Hope flies for friends
The Recorder · March 6, 2014
Second annual fundraiser builds awareness for mitochondrial disease and treatment. Carrie Resch The Recorder Hope is defined as a feeling of desire to want something to happen. For individuals who are diagnosed with a rare disease, and their support system of family and friends, hope, sometimes is all they can cling to. Hope to live a “normal” life. Hope to be free of painful symptoms. Hope to one day find a cure. Mitochondrial disease is one such rare disorder. The often shadowed and seldom spoken of disease had a spotlight shown on it at the second annual fundraiser, Hope Flies for Friends — held Feb. 20 at Table 1 in Ponte Vedra Beach. Event organizers, Phyllis Bove and Lisha Wise hoped the occasion would help foster awareness of the disease while raising funds for research. Proceeds from the fundraiser were donated to The Mitochondrial Foundation to support their research into finding an effective treatment for the disease.
What is mitochondrial disease? Mitochondria are the powerhouse of cells, so mitochondrial disease, put simply, is an energy production problem, according to Laura Stanley, executive director for the Foundation for Mitochondrial Medicine located in Atlanta, Ga. Stanley drove down from Atlanta to speak at the fundraiser dubbed Hope Flies for Friends. Mitochondrial disease affects one in 2,500 people, according to the Foundation for Mitochondrial Medicine. Symptoms can appear at any age. An illness can trigger symptoms later in life. The parts of the body that need the most energy such as the heart, brain, muscles and lungs, are the most affected by the disease, according to the United mitochondrial disease Foundation. Individuals diagnosed with the disease may have strokes, seizures, gastrointestinal problems such as reflux, sever vomiting, constipation, diarrhea, or swallowing difficulties, blindness, deafness, heart and kidney problems, immune system problems and liver disease, according to the foundation. “Every situation is different,” Stanley said. Symptoms suffered by one individual with the disease may be totally different in another individual. Stanley knows all too well the plights these families with children suffering from the disease go through. Her oldest son was diagnosed with the disease four years ago. That diagnosis eventually led her to the Foundation for Mitochondrial Medicine and to her current position as the executive director. HOPE continues on Page 23
Carrie Resch/The Recorder
The Sacco family: Carson, Amanda, Bryan and Caroline
Carrie Resch/The Recorder
Lauren Quinn and Eric Quinn
Provided by Carol Young
Stacy Young
Caroline Sacco, Lauren Quinn and Stacy Young all suffer from mitochondrial disease. These local youths inspired the fundraising and awareness event held last month in Ponte Vedra. Quinn and Young, who were diagnosed as teenagers, attended last year’s event, and Sacco, who was diagnosed three years ago at the age of 6, was a new face at this year’s fundraiser.