5K race held for Jackson, MO 2-year-old with rare disease - KFVS12 News & Weather Cape Girardeau, Carbondale, Poplar Bluff

5K race held for Jackson, MO 2-year-old with rare disease

(Source: Amber Conn) (Source: Amber Conn)
(Source: Amber Conn) (Source: Amber Conn)
(Source: Amber Conn) (Source: Amber Conn)
JACKSON, MO (KFVS) -

Amber Conn of Jackson hosted a 5K in Jackson on August 13 to spread awareness about her daughter's rare neurological disease. 

Her daughter's name is Jordyn Conn. She is just 2 years old. She was diagnosed with Alexander Disease on October 2, 2015.

According to National Organization for Rare Disorders (NORD), Alexander disease is named after the physician who first described the condition in 1949 (WS Alexander).

It is an extremely rare, usually progressive and fatal, neurological disorder.

Initially it was detected most often during infancy or early childhood, but as better diagnostic tools have become available has been found to occur with similar frequency at all stages of life. 

Conn says she is very passionate about spreading awareness about Alexander Disease and hopes more research is made to help others and her daughter.

Registration for the race began at 7 a.m. and the race kicked off at 8:30 a.m. at the Jackson City Park near the ball fields on N. Union St.

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