Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

Hope was Flying at Turner Field!

HFBraves 2014On Saturday July 26th, members from Georgia’s Parkinson’s Coalition welcomed nearly 100 guests at Turner Field for the Second Annual Hope Flies with the Braves.  Guests were welcomed by FMM Ambassador, Colby Wren, and enjoyed the 5-3 Braves win over the Padres.  Connections were made among new and old friends to help raise awareness for mitochondrial disease and the many related diseases. A special thanks to Heritage Bank – The Albright Mortgage Team, Terri and Frank Wren, Dawn and Will Brown, Christopher Bennecchi and Linda and Nathan Bennett for sponsoring this year’s event. The Georgia Parkinson’s Coalition includes: The Foundation for Mitochondrial Medicine, Wilkins Parkinson’s Foundation, Team Cantore and the Georgia Chapter of the American Parkinson’s Disease Association (APDA), all of whom are collaborating to raise awareness for Parkinson’s and mitochondrial disease. According to the CDC, 1 in 500 people are affected by Parkinson’s and 1 in 2,500 people are affected by mitochondrial disease. Mitochondrial dysfunction, a cellular energy deficiency problem, is at the root of both diseases. Collaboration among organizations like these can speed the cures for both diseases. About the Foundation for Mitochondrial Medicine (FMM): The Foundation for FMM Logo with TagineMitochondrial Medicine’s mission is to support the development of the most promising research and treatments for the many forms of mitochondrial disease.  Cures for mitochondrial diseases could impact cures for Autism, Alzheimer’s, Parkinson’s, and Lou Gehrig’s disease among others.  For more information on FMM funded research such as testing of new drug compounds and functional MRI studies on cognitive fatigue, visit www.mitochondrialdiseases.org About Wilkins Parkinson’s Foundation WPF_logo_CMYKWilkins Parkinson’s Foundation (WPF) is dedicated to accelerating the cure and treatment of Parkinson’s Disease. Our strategies include directing funds to research, education and awareness, working to increase collaboration between other PD nonprofits, and advocating on behalf of the entire Parkinson’s community. http://www.wilkins-pf.org   About Team Cantore Team CantoreFounded in 2000, by Tamra Cantore, not long after her diagnosis of Parkinson’s Disease at the age of 40, the mission of Team Cantore is to increase awareness of the changing faces of Parkinson’s, as well as the need for increased funding for research.  Research is the only way we will slow the progression of this disease and, ultimately, find a cure. http://www.teamcantore.org About APDA APDA logoThe American Parkinson’s Disease Association was founded in 1961 to “ease the burden and find a cure” for Parkinson’s disease. The organization focuses its energies on research, patient services, education and raising public awareness about the disease. http://www.apdageorgia.org

Katie Parsons, a 6th Grader Working to Fund the Cures for Mitochondrial Disease!

Meet Katie Parsons, an engaging 11-year-old girl from Marietta, Ga.  Katie is an outgoing, happy 6th-grader that loves riding and jumping horses.  She has also recently started as a percussionist. Katie is also very excited to earn her babysitter and CPR certificate because she loves taking care of others, especially little kids. In many regards, Katie is just like her classmates, except that she has mitochondrial disease.

Katie was born healthy at 7 pounds 11 ounces. Her health was fine her first few weeks, but then she started having issues with reflux. At 6 weeks, she saw her first specialist – a gastroenterologist.  As the reflux worsened she began to not eat and she developed torticollis and plagiocephaly. Even at this early age, she knew that eating caused her pain, so she had to have an NG tube to help her from losing further weight. This was just the beginning of many ER visits and hospitalizations.

It was not until an ER visit where her blood sugar was in the 30s that Katie’s parents began to get the feeling that something was very wrong. Katie began crying from excruciating pains in her legs and began falling. The family began a journey with specialists included endocrinologists, geneticists, allergists and nutritionists.  Katie was hospitalized many times due to illness, blood sugar fluctuations and respiratory issues. Her parents were scared and felt helpless knowing something was wrong, yet they still had not received a concrete diagnosis.

Katie sold 139 snow cones to raise money for FMM and mitochondrial disease research.

Katie sold 139 snow cones to raise money for FMM and mitochondrial disease research.

Katie’s parents took her to Dr. John Sladky, a neurologist who conducted an EMG and confirmed Katie’s myopathy. Dr. Sladky was the first specialist to mention mitochondrial disease. From that appointment, Katie went to Dr. John Shoffner, a leading mitochondrial expert and researcher.  A muscle biopsy with Dr. Shoffner confirmed Katie’s mitochondrial disease, Complex 1 and 3. After starting a regimen of medications, her symptoms started to improve.

Through the next several years, Katie’s condition has constantly evolved through highs and lows.  Additional medications help make dramatic improvements, and then other health issues develop, such as cerebral folate deficiency, asthma, lactic acidosis and migraines. Through it all, Katie has stayed strong and positive.  Even though from the outside she looks like nothing can be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to run.

Katie is now a young philanthropist and raises funds for the Foundation for Mitochondrial Medicine.  She began making earrings, bookmarks, wallets, drink koozies and other items from duct tape and started Katie’s Duck Tape Kreations. She sells her items and donates a portion back to the Foundation.  She also recently held a snow cone sale at her school to raise additional money.  Katie sold 139 sno cones for FMM!

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Atlanta Braves game and represented the Foundation for Mitochondrial Medicine at the Foundation’s first annual Hope Flies with the Braves Families Day at Turner Field. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren.

Earlier this fall, Katie was recognized 11 Alive’s Random Acts of Kindness and honored as FMM’s first Firefly Friend.

Katie is a shining example that one person can make a difference, no matter their age. The Foundation can’t wait to see what the future holds for this creative and enthusiastic girl!

Hope Flies with the Braves

On July 28, 2013, the Foundation for Mitochondrial Medicine held their first annual Hope Flies with the Braves Families Day at Turner Field. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren. The FMM staff and volunteers welcomed all the families, and everyone enjoyed making connections with old and new friends and sporting their Hope Flies Athlete t-shirts and Hope Flies temporary tattoos.

After the pre-game festivities, the group headed to their seats to cheer on the Braves. Marietta resident Katie Parsons was selected from the Hope Flies with the Braves attendees to call out the official “play ball” just before the first pitch and represented the Foundation for Mitochondrial Medicine! Katie, age 11, has complex 1 and 3 mitochondrial disease among other medical issues. She is a bright and happy girl and was delighted to make the “play ball” call and was excited about being featured on the Braves jumbotron screen.

Katie Parsons yells "Play Ball"

Katie Parsons yelling “play ball” at the Hope Flies with the Braves Family Day at Turner Field.

To view more pictures from this year’s Hope Flies with the Braves, click here.

Stay connected with FMM to hear more about Hope Flies with the Braves and other Hope Flies events!

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