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5K event raises more than $77,000 for the UMDF over four years

Star Staff Reports

Jackson Culley

Jackson Culley

The fourth annual Jackson Culley Mito-What? 5K was held in Millington, TN at USA Stadium on March 23.

This year’s event raised more than $17,000 for the United Mitochondrial Disease Foundation (UMDF). Over the past four years, the event has raised more than $77,000.

Angie Hayes and Cindy Kraft, who both live in Atoka, have spearheaded this event for the past four years in honor of Jackson Culley, a 6-year-old boy who lives in Millington,  and has a mitochondrial disease called Leigh’s Disease/Syndrome. Leigh’s Disease is a progressive neurometabolic disorder with a general onset in infancy or childhood, often after a viral infection, but can also occur in teens and adults. It is characterized on MRI by visible necrotizing (dead or dying tissue) lesions on the brain, particularly in the midbrain and brainstem. To watch a video about Jackson’s daily needs, go to http://www.youtube.com/watch?v=XrLK1p3O7WQ.

Both Hayes and Kraft have been instrumental in running this event for four years yet no one in their family is affected by mitochondrial disease. Hayes and Kraft are both runners and Hayes wanted to organize a 5K in Millington, but was looking for a purpose to hold one. When she saw Emily Culley’s flyers about her fundraiser at McAlister’s Deli in September of 2009, she knew that she found her purpose. Hayes and Culley were acquaintances through the Millington School of Dance at that time. Kraft is a school friend of Culley’s.

Culley is realistic about her son’s illness. She knows that there is little that can be done to improve his health at this time, but she is hopeful for a cure. She holds an event every September to make people aware of mitochondrial disease. Culley said, “I am grateful to our friends, family, and the Millington community for joining together over the past four years to support Jackson and his mito buddies and to help fund research for a cure. All we want is a chance.”

Jackson Culley Mito-What? 5K

To watch a video about the Jackson Culley Mito-What? 5K race from March 23, 2013, go to http://www.youtube.com/watch?v=Z1yb84_Y_kU.

To learn more about the Jackson Culley Mito-What 5K and Jackson’s mito buddies, go to the Jackson Culley blog: http://www.mitowhat5k.blogspot.com/.

About Mitochondrial Disease

What is mitochondrial disease? Mitochondria are the power plants in almost every cell in the body. They produce 90% of the energy required for the body to function. Mitochondrial disease results when defects in the mitochondria fail to convert food into life sustaining energy. When the brain, heart, muscles and lungs are deprived of energy, they begin to fail. There are more than 40 known types of mitochondrial disorders and more than 200 inherited diseases of metabolism that are known to affect mitochondria. While the majority of cases are inherited, there are cases in which the disease seems to be a random occurrence. Every 30 minutes, a child is born with a mitochondrial disease. Adults are also affected by mitochondrial diseases.

About the United Mitochondrial Disease Foundation

The UMDF connects patients with mitochondrial disease experts and provides support to both the newly diagnosed and those living with mitochondrial disease. Information, local referrals, publications, programs, and volunteer opportunities are available from the UMDF and our national network of chapters, groups, and ambassadors. Since its inception in 1996, the UMDF has funded nearly $11 million in research, making it the leading non-governmental contributor of grants focused solely on mitochondrial disease. For more information about mitochondrial disease or the UMDF, go to www.umdf.org or call, toll-free, 1-888-317-8633.

 

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