Event set to raise money for rare disease

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Event set to raise money for rare disease

A Middletown family is hoping to raise money and awareness of a rare disease that has killed at least 10 of their relatives.

Spino Cerebellar Ataxia Machado-Joseph Disease has claimed the lives of 10 people from the Sims, Moss, and Johnson families. On Nov. 8, 2014, Aaron Sims, a 1998 Middletown High School graduate, died from the disease. He was 34.

Two more family members, Vickie Johnson, of Middletown, and Cathy Moss, of Atlanta, have been diagnosed with the deadly disease.

Ataxia MJD is a rare hereditary genetic disease that causes the degeneration of the cerebellum and spinal cord, according to the National Institute of Neurological Disorders and Stroke. As the disease progresses, muscles become less and eventually non-responsive to the brain’s commands. There is no medication or treatment available that can prevent or even treat the disease. Therefore research is important, the family said.

“The community needs to know what we didn’t know for generations,” said Kelvin Moss, 31, the girls basketball coach at Middletown High School who has lost a grandmother, mother, two aunts and an uncle to the disease.

The Sims-Moss-Johnson Family PUSH UP & PUSH OUT Awareness campaign has partnered with the National Ataxia Foundation to raise funds for the research drive and research match campaign from noon to 1 p.m. Saturday at Dedicated Motivated Fitness Solutions, 2835 Cincinnati Dayton Road. All are invited to come out to Push Up & Push Out while doing push-ups. The number of push-ups participates complete within one hour will be counted.

Donations are $5 for students and $10 for adults. Local businesses, churches, and other organizations are being encouraged to match the number of push-ups completed up to $100.

Participants are also asked to make a video documenting their push-ups and post the video to social media websites using the hashtags: #pushupandpushoutchallenge #ataxiamjdawareness.

Donations also can be made online at ataxia.org in memory of Aaron Sims.

For more information, contact campaign coordinators Lindsey Hazelbaker-Moss and Marie Edwards at Lindsey.hazelbaker@gmail.com or Marieedwards1977@gmail.com.

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