Charlotte dedicates May to rare disease; local mother hoping to spread awareness

CHARLOTTE — The City of Charlotte plans to proclaim the month of May as Tuberous Sclerosis Complex month on Tuesday.

The life-changing genetic disease is impacting a local family. At just seven weeks old, Jackson Moore was diagnosed with TSC, which causes tumors to form in vital organs. There is currently no cure.

Jackson is now three and also has autism, which is often developed with the disease. His mother, Kristen, is meeting with the city in hopes of spreading more awareness about TSC. She is the vice chair for TSC Alliance of North Carolina.

“Just raising awareness,” Kristen said. “This disorder is as common as Lou Gehrig’s disease and cystic fibrosis- which a lot more people are aware of.”

Kristen hasn’t met many families in the Charlotte area that have been affected by the disease.

“Since it’s rare, I’ve only met only five other families in the Charlotte region that have been affected,” Kristen said. “I think there is probably more.”

This Saturday, you can support efforts to find a cure at ‘Step Forward’ to cure TSC. It will be at Cherry Park in Rock Hill. The proceeds will benefit TSC Alliance, which supports treatments for the disease. For more information on the event, click here.

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