UMDF Honors Matthews, NC Woman With Highest Volunteer Award

June 28, 2011 - PRLog -- The award is the UMDF’s most prestigious national award honoring a UMDF Leader who best represents the selfless dedication and commitment to the UMDF Mission as that of its namesake.   Despite her illness, Christy has chosen to be part of the cure rather than a victim of mitochondrial disease through her leadership and her commitment to the mission of the UMDF,” said Charles A. Mohan, Jr., CEO/Executive Director of the UMDF.  

“An inspiration to many through her good works and tireless advocacy, Christy has helped to increase awareness of mitochondrial disease and to improve medical care in the Charlotte community.   But mostly, she exemplifies that if one puts her heart and mind into something, anything is possible,” Mohan said in making the award presentation.  

Koury joined the board of the Carolina Foothills Chapter at its inception in 2008.   She participated in Donna Pulliam’s “Caroline’s On My Mind” event to benefit UMDF in Spartanburg, SC for several years, hoping to learn enough there to be able to host a walk in Charlotte someday. ”Someday” came sooner than expected.  In 2010, UMDF’s signature Energy For Life walkathon was born, and Charlotte hosted its first walk, with Koury as event co-chair.

On a beautiful September 18, 2010, 644 walkers gathered at Freedom Park in Charlotte, raising over $72,000 at the first Carolina Foothills Energy For Life Walkathon.  Koury’s hard work and focus on the cause made the event a great success.   Amber Greenawalt, fellow 2010 event co-chair stated, “It was a pleasure to co-chair the inaugural Energy For Life Walk with Christy. Her dedication to finding a cure for mitochondrial disease is an inspiration to so many families.”

Koury was instrumental in bringing Physician Grand Rounds to Charlotte’s two largest hospitals in 2010. Christy continuously networks with mitochondrial disease specialists across the region to help local families.   Even mitochondrial specialists are touched by her dedication. “Christy is a beacon of light and hope to so many including myself.  Her tireless and selfless devotion to her family and the mito community at large is inspirational to all.  She epitomizes all that is good and right in this world,“said Fran Kendall, M.D., Virtual Medical Practice.

Koury is a tireless advocate for families of children affected by mitochondrial disease.   She is active with online forums and Facebook, where she connects with other families from around the world.  Koury has reached beyond the mitochondrial disease community to educate those in the autism community about the signs of mitochondrial disease. “Before I met Christy, I didn’t know mitochondrial disease existed. Now I am seeking diagnosis for myself and my child,” said Shelley Reilley, CEO/President of Parker Autism Foundation.

Koury has been experiencing mild signs of mitochondrial dysfunction, and her condition has worsened over the past few years.   In February of 2011, Christy was given a working diagnosis of mitochondrial disease based on clinical symptoms. Despite the challenges presented by her symptoms, Christy presses on.   Mitochondrial disease may slow her down, but it is not stopping her in her quest to help find a cure.

ABOUT MITOCHONDRIAL DISEASE
Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10, although the actual number of children born with the disease is thought to be much higher.  In fact, recent research indicates that one in 200 people harbor a genetic mutation that can lead to mitochondrial disease in them or their offspring.  Most patients suffer symptoms for years before they are accurately diagnosed with a mitochondrial disease.  Mitochondrial diseases result from the failure of the mitochondria, which is a located in the cells of our bodies.   Mitochondria are responsible for creating more than 90% of the energy needed to sustain life and support growth.   When mitochondria fail, less energy is produced causing cell injury or cell death. On a larger scale, organ systems begin to fail. The disease is often debilitating.   In some cases, it may result in death.   Adult onset is becoming more and more common. There is no cure for mitochondrial disease.

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About the United Mitochondrial Disease Foundation
Founded in 1996, the UMDF works to promote research and education for the diagnosis, treatment and cure of mitochondrial diseases and to provide support for affected individuals and families. Since its inception, the UMDF has funded nearly $8 million in research, making it the leading non-governmental contributor of grants focused solely on mitochondrial disease. The UMDF is based in Pittsburgh, PA.