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.
Community News 23
The Recorder ¡ March 6, 2014
Carrie Resch/The Recorder
Hope Flies for Friends mitochondrial disease awareness bracelets and magnets. Mitochondria Disease Awareness week is the third week in September.
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Mitochondrial disease can greatly limit how a person with the disease operates on a day to day basis. Everyday activities such as driving may not be possible for someone suffering with the disease. Limitations from mobility can also be a factor. There is no cure for the disease or an effective treatment. Specific ailments can be targeted for treatment through what is known as a “Mito cocktail� a mixture of vitamins, supplements and medicine used to treat symptoms. Difficulties with that method include finding the right combination and the fact that new symptoms of the disease can appear as the disease progresses.
The faces of mitochondrial disease Three local youths with mitochondrial disease inspired the fundraising and awareness event and served as honorary chairs: Lauren Quinn, Stacy Young, and Caroline Sacco. Quinn attended last year’s fundraiser. She was diagnosed with mitochondrial disease at the age of 15. She is now a junior in high school, and a lot has changed in a year. Though there is no cure for her disease, she has felt a marked improvement in her health. “I’ve gotten a lot better,� Quinn said. “I’ve been able to go to school, act like
a normal kid,� she said. Quinn has even been able to work her way back up to playing sports, an activity she was very involved in before she was diagnosed. In addition to dealing with the usual stresses at this high school level including prepping for the ACT, the SAT, and applying for college, Quinn still has to face the uncertainty of her disease and take one day at a time. As for her college aspirations, she said that she would like to do something with children. “I really want to help kids in some way and give back to them from what I’ve learned in my sickness,� she said. “I don’t want them to be as miserable as I was. I want them to feel at comfort and at ease. So, any way possible, I want to do that,� she said. Young was also at last year’s fundraiser but was unable to attend this year. She is currently completing her freshman year at the University of Central Florida where she is studying bio medicine. She would like to become a pediatrician. Her desire to work with children also stems from her experience with the disease. Young was diagnosed with mitochondrial disease when she was 16 year old. She has difficulty with chronic pain, muscle weakness, and GI issues. Her symptoms continue to change, sometimes on a daily basis. Most recently, HOPE continues on Page 24
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24 Community News
The Recorder · March 6, 2014
Hope
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she has had some memory and processing issues. Despite of these challenges, Young is doing well at college. She is working with a leadership group to develop an awareness group for college students with chronic illnesses. The group is trying to help her raise funds for a service dog. Young experiences “brownouts” where her body shuts down but she is still aware of what is going on around her. The episodes can last anywhere from 10 minutes to four hours, according to her mother, Carol Young. The hope is that a service dog might be able to alert her of an impending episode where she could get herself to a safe place. A service dog could also be trained to retrieve her phone or medicine bag for her and could help with stability when she is having difficulty with mobility or balancing. At this year’s fundraiser, there was a new face - 9-year-old Caroline Sacco. Her mother, Amanda Sacco, said that Carrie Resch/The Recorder Caroline was really sick when she was The “web of connectivity” sculpture is a 3D model used to show the way mitochondrial disease can born and was in intensive care. Carobe associated with many other diseases including Parkinson’s, Alzheimer’s, Lou Gehrig’s disease, line had developmental issues when chronic fatigue syndrome and diabetes, among others. The hope that finding a cure for mitochonshe was a baby and toddler. Before her dria disease will impact cures for these diseases and more. People attending the fundraiser were diagnosis, she would get sick with colds asked to place magnets on sculpture if they knew someone affected by one of these diseases. or viruses often, and her doctors attributed that to her traumatic birth. Caro- when she was five-years-old. At that and the long days appeared to be takPVRecorder.3.6.14:Cunninham 1/24/04age, 2/21/14 AM attending Page 1 school ing their toll. More symptoms began to line began experiencing a lot ofAd fatigue she had11:35 started appear. When Caroline was six, she was finally diagnosed with mitochondrial disease. Caroline has had five bone fractures in the past three years; doctors think that the mitochondria in her bones are defective, according to Sacco. Caroline wears braces to support her feet and ankles, goes to physical therapy, is on several medications and sees several specialist that help treat symptoms from the disease. Right now, she’s able to attend school full-time. Sometimes, though, after a particularly long day, Caroline experiences cognitive fatigue and is too exhausted to do her homework. Caroline overheats easily, so she wears a vest equipped with ice packs to keep her cool and so that she can still enjoy outings with the family, such as attending her brother’s baseball games. Sacco’s son attends the same school as the Quinns. She saw an article about the Quinns on the school’s website. Sacco emailed Barb Quinn and told her about Caroline and that she’d like to help out with fundraisers. The two mothers have become friends united by their shared struggle with the disease affecting their children.
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Watching a friend or a loved one suffer while their health declines is not something that anyone wants to experience. Diagnoses for mitochondrial disease is often a long road that involves seeing numerous doctors and specialists before finally getting the diagnosis.
In the case of some of the families at the Hope Flies for Friends event, it was several years before a diagnosis was made. Eric Quinn is Lauren Quinn’s twin brother. He spoke at the fundraising event to share his family’s struggles with finding a diagnosis for his sister’s ailments. Quinn recalls a specific time when he was 13 years old where he came home from school to find his sister, who was home sick, lying on the floor. It is a memory he said he will never forget. “I came home and I remember that she was in her pajamas and she was lying on the floor and she couldn’t move because she was so nauseous and sick and so pale,” he said. “She just couldn’t move at all — her muscles were so weak.” That was before his sister was diagnosed with the disease. It disturbed him to see his twin, his “other half” in such a state. His poignant account included the word “we.” As in, when he said “We finally got a diagnosis after 14 doctors and different specialists that we went to.” That inclusiveness is a central point of this disease. The disease not only affects the individual, but the entire family unit and even friends and concerned neighbors and colleagues, especially in the early stages where the individual has yet to be diagnosed. Quinn said that this experience has made his family even stronger. Quinn has become an advocate for mitochondrial disease awareness. He started a mitochondrial disease awareness club at his school in 2012. He’s also raised awareness in the community by speaking about the disease at local clubs, and he has done interviews on radio shows.
Research is the answer The Foundation for Mitochondrial Medicine is taking an innovative approach to finding a cure. Mitochondrial Disease can be associated with many other diseases including, Parkinson’s, Alzheimer’s, Lou Gehrig’s Disease, chronic fatigue syndrome, and diabetes, among others. Stanley refers to this as the “web of connectivity” where mitochondria malfunction is the fundamental thread connecting these diseases. “Mitochondria, are kind of the cause in all of these diseases,” Stanley said. The mission of the Foundation for Mitochondrial Medicine is to raise awareness for mitochondrial disease and make the connections to the other diseases caused by malfunctioning mitochondria. Finding a cure for mitochondrial disease can make an impact on finding a cure for these other diseases. With that in mind, the foundation has partnered with research programs for such diseases to try and have a collective impact on mitochondrial disease, as well as, diseases related to mitochondria malfunction. HOPE continues on Page 25
The Recorder · March 6, 2014
Community News 25
Hope
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The foundation has co-funded a project with the New York based Alzheimer’s Drug Discovery Foundation that they are calling a “mitochondrial drug discovery project,” and they are currently in conversations with the Michael J. Fox Foundation and are going to support some research with that foundation that will be taking place at the Jacksonville Mayo Clinic. Tickets to the Hope Flies for Friends fundraiser were $25 per person. The fundraiser included a wine tasting and pairing of Table 1 appetizers. Last year’s fundraiser was held Sept. 20 to coincide with Mitochondrial Awareness Week. This year’s fundraiser coincided with Rare Disease Day on Feb. 28. February is also Rare Disease Month. Last year’s event raised almost $12,000 for mitochondrial disease research. This year, the hope was to raise $13,000. Donations, so far, have exceeded that goal. At last count, $14,000 had been raised with donations still coming in. Donations can still be made online at www.hopeflies.org/friends. For more information about mitochondrial disease, visit the Foundation for Mitochondrial Medicine at www.mitochondrialdiseases.org. carrie@opcfla.com (904) 686-3939
Provided by the Foundation for Mitochondrial Medicine
This diagram shows how mitochondria dysfunction is the central element to better known diseases including Autism, Parkinson’s disease, Alzheimer’s disease, Lou Gehrig’s disease, muscular dystrophy, and chronic fatigue syndrome, according to the Foundation for Mitochondrial Medicine. Finding a cure for Mitochondrial Disease could impact cures for these diseases, according to the foundation.
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