Nixa Resident Pushes for Rare Disease Day Designation

Feb 27, 2015

Kenzie Kauble (2nd from left) and Her Family
Credit City of Nixa

A Nixa resident whose daughter has a rare disease is getting support from Nixa City Council and from the state of Missouri.  Teri Kauble's daughter, Kenzie, was born with 19Q duplication.  The duplication of the 19th chromosome can result in reduced muscle tone, mental retardation, poor physical development, skeletal defects and more.

Nixa City Council has proclaimed February 28th as Rare Disease Day in the city.  Kauble says the designation was a goal of hers to help raise awareness.

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  According to rarediseaseday.us, any disease affecting fewer than 200,000 people in the nation is considered rare.  It says, besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information and get treatment.

Kauble also requested, and received, a proclamation from the state of Missouri