Three Kokomo families affected by a rare nerve disease are fighting to raise awareness.
Through the efforts of Renata Sharp, Kokomo Mayor Greg Goodnight and Gov. Mitch Daniels have signed proclamations dedicated to Multiple System Atrophy, or MSA. She intends to contact President Barack Obama.
As a result of this rare condition, the Kokomo families have become a closely knit family, providing support to each other.
Sharp’s husband, Tom, died in September 2010 from MSA. Through a blog concerning the disease, Chris Markiewicz, who was diagnosed with MSA eight year ago, connected with Sharp.
After a story appeared last year in the Kokomo Tribune, Francie Hutton, who’s husband Dewayne died of MSA last October, also made contact with Sharp.
The three gather periodically for lunch and keep in constant contact.
MSA impairs the autonomic nervous system, which regulates many of the body’s automatic functions. The degenerative disease affects one person in 100,000, but it has struck three Kokomo families.
MSA causes symptoms similar to Parkinson’s disease, but patients with MSA have more widespread damage to controls for important vital functions, such as heart rate, blood pressure and sweating, according to the National Center for Biotechnology Information website.
Goodnight has issued a proclamation designating next week “Multiple System Atrophy Awareness Week.”
Gov. Mitch Daniels has designed March 12 through the 16th “Multiple System Atrophy Awareness Week” in the state.
Sharp said work on securing the two proclamations started in January.
“It was a very easy process,” she said. “I had a copy of another proclamation and used it as a guide.”
Sharp said she talked to Goodnight, and he asked a lot of questions about MSA.
“It was a surprise to me,” Markiewicz said of the two proclamations. “It was all Renata.”
Markiewicz called Sharp the group’s lobbyist.
“When she told me about the city proclamation and that she was working on the governor, it was a shock to me,” he said.