Three Jacksonville Families Partner with the Foundation for Mitochondrial Medicine – Hope Flies for Friends
Three Jacksonville families are partnering to host a benefit for the Foundation for Mitochondrial Medicine and the Hope Flies for Friends fundraising event. Hope Flies for Friends is inspired by three Jacksonville youth that have mitochondrial disease — Lauren Quinn, Stacy Young and Caroline Sacco – honorary chairs of the event.. The event is scheduled for Thursday, February 20, 2014 at 5:30 pm at Table 1 in Ponte Vedra Beach and will feature wine tastings paired with items from the Table 1 menu. Organizers hope the event will raise $13,000 for the Foundation.
Mitochondrial disease is an energy production problem that primarily affects the muscular and neurological systems. Mitochondrial are the “power plants” that produce the body’s essential energy and when they don’t function properly, the body can have a “power failure.” There is a graduation of affects – ranging anywhere from a “brown out” to a fatal “black out” – and no two people diagnosed with mitochondrial disease have the exact same symptoms. Mitochondrial dysfunction is at the crux of many common diseases including Autism, Alzheimer’s, Parkinson’s, ALS, and chronic fatigue, and research and treatments for mitochondrial disease could help in treatments for these other diseases. Mitochondrial disease affects 1 in 2,500 and currently there are no treatments available.
Lauren Quinn, a high school junior, was diagnosed in 2011. Although Lauren has had a lifelong passion for sports, her mitochondrial disease means she no longer has the energy to play sports. Completing a full week of school, along with the rigors of being a junior in high school and minimal social activities, often times leave Lauren extremely fatigued with muscle weakness and the inability to concentrate. She usually spends her weekends resting and giving her mitochondria time to recover for the next week. More recently, she has developed significant memory issues that has created additional challenges.
Stacy Young is a freshman at University of Central Florida, majoring in biomedical sciences with the goal of becoming a pediatrician. Stacy became ill at age 11 and received an incorrect diagnosis of mononucleosis. After struggling to find an answer to her medical issues, she was finally diagnosed with mitochondrial disease at age 15. Her symptoms continue to progress and change frequently, sometimes on a daily basis. The unpredictability of her symptoms is extremely challenging to cope with and she struggles with fatigue, GI issues, chronic pain, muscle weakness, neuropathy, memory issues and more. Often, she is unable to perform daily tasks such as eating, attending school, driving, or walking. Stacy enjoys dancing, cooking and spending time with her friends and family.
Caroline Sacco is nine years old and has experienced health issues from birth. She was born in respiratory arrest and she failed to meet early developmental milestones. By the age of three months, Caroline was undergoing intensive early interaction therapy. Throughout her early childhood, multiple doctors were not able to determine the cause of her health issues and she was not diagnosed with mitochondrial disease until age 6. Her mitochondrial disease affects many of her body’s systems including her respiratory, muscular, bone, digestion and immune systems among others. She is a happy child and loves her school and classmates.
“The families hosting Hope Flies for Friends have a true passion to educate others about mitochondrial disease and the importance of finding a cure. Their efforts translate into significant funds raised,” said Laura Stanley, executive director for the Foundation for Mitochondrial Medicine. “Hope Flies for Friends is a fun way to get involved, support local Jacksonville families and help fund a cure for mitochondrial disease.”
Tickets to the Hope Flies for Friends are $25 per person and sponsorships are available. Event Chairs are Lisha Wise and Phyllis Bove and the event committee includes Barbara Quinn, Carol Young, and Amanda Sacco. For more information about Hope Flies for Friends, visit www.hopeflies.org/friends or visit the Facebook page at www.facebook.com/hopefliesforfriends.