Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

Hope Flies Catch the Cure is Celebrating 5th Anniversary

Laura Stanley, Dr. Shoffner, Lane and Richard Courts at Hope Flies Catch the Cure 2010.

Laura Stanley, Dr. Shoffner, Lane and Richard Courts at Hope Flies Catch the Cure 2010.

Can you believe it has already been five years since a group of longtime pals and newly acquainted friends got together to “do something to raise awareness and funds for mitochondrial disease?” What started out as an idea to have a backyard party in a local home quickly began to morph into something so much more. Before we knew it, things had moved beyond a party, beyond the backyard and into a larger concept, movement and into the empty 18th  floor of Cousins Properties’ Terminus Building.

Frank and Terri Wren with Kim and Bill Shepherd. 2011 Hope Flies Catch the Cure Chairs.

Frank and Terri Wren with Kim and Bill Sheppard. 2011 Hope Flies Catch the Cure Chairs.

The original organizers, led by Lane and Richard Courts, consisted of:  Missy Courts, Liz Ebert, Heather Edmiston, Laura Green, Kimberly Ichter, Margaret Kauffman, Margaret Martin, Michele Nichols, Kim Sheppard, Laura Stanley and Elizabeth Yates.  These novice party planners pulled off an amazing first time event, which hosted 600 attendees and raised $220,000.

In 2011, the Hope Flies Catch the Cure committee was led by event chairs, Kim and Bill Sheppard with Honorary Chairs, Frank and Terri Wren.   Hope Flies Catch the Cure raised over $200,000 for it’s second year and had attendance of friends and family from across the nation.

Margaret Martin, Virginia Maguire and Heather Edmiston

Margaret Martin, Virginia Maguire and Heather Edmiston

In 2012, more than 450 guests enjoyed Hope Flies Catch the Cure at Mason Murer Art Gallery. The event raised approximately $220,000. Party chairs were Heather and David Edmiston and Virginia and Matt Maguire. Honorary party chairs were Margaret and Chris Martin.

Last year, Hope Flies Catch the Cure has held on a lovely September night at Mason Murer Art Gallery. Guests enjoyed dancing to retro ‘70s music from Yacht Rock Revue, delicious food from Endive catering, and open bars provided by Georgia Crown distributors. Danielle and Jim Poppens were event chairs, and honorary party chairs were Laura and David Green. More than $210,000 was raised and all proceeds benefit the foundation and its mission to fund research for mitochondrial disease treatments.

Hope Flies Catch the Cure 2013 Organizing Committee Members

Hope Flies Catch the Cure 2013 Organizing Committee Members

Over the past four year, Hope Flies Catch the Cure has nearly $850,000.  Help us exceed our goal to raise over 1 million dollars in five years and have a record breaking year in 2014.

We’re gearing up for a special 5th year anniversary celebration, to toast FMM’s progress. This year’s committee will be led by Cara and Todd Lacey with Honorary Chairs, Lane and Richard Courts.

 

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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