Be aware, lawmakers urge

Saturday, March 7, 2015

COLUMBUS

Lawmakers excel at designations.

Each session, they produce dozens of bills designating official state this or honorary state that. There are new road signs and license plates and days and weeks and months set aside to prompt residents to think about various issues.

Some, like the signs that memorialize fallen military men and women along Ohio roadways, are somber and serious.

Others are borderline laughable.

Last week, the Ohio House took time to pass legislation that would adopt “Hang on Sloopy” as the official state rock song, sending it to the Ohio Senate for further consideration.

The bill is not going to put food on anyone’s table or get anyone a job. Instead, it’s lighthearted legislation and likely a welcome respite from the hours of dull testimony on the minutiae of the biennial state budget.

There are plenty of examples of comparable bills.

Thanks to legislative action last month, we now have a month focused on maple syrup production, a day devoted to the country music trio Rascal Flatts, a license plate featuring the Ohio Statehouse and a soon-to-be-designated state poet laureate.

Again, it’s not economy-shaking stuff, but such bills are important to somebody somewhere and shouldn’t be belittled outright.

DISEASES, DISORDERS

On a more serious note, lawmakers also focus their attention each session on bills to spotlight diseases and disorders.

Last session, they set the last day of February as Rare Disease Day and October as Dyslexia Awareness Month.

Already this session, there have been several bill introductions dealing with debilitating diseases. One would set November as Alpha-1 Antitrypsin Deficiency Awareness Month. Another would designate May 14 as Childhood Apraxia of Speech Awareness Day.

Last month, the Ohio House passed a bill to designate the second week of September as Krabbe Disease Awareness Week. The inherited disorder “destroys the protective coating of nerve cells in the brain and throughout the nervous system,” often in infants, leading to seizures and loss of sight, hearing and the ability to breathe, according to the state’s Legislative Service Commission.

RETT SYNDROME

In more recent days, a little girl name Brynn was at the Statehouse. She’s unable to use her hands or walk or talk, due to something called Rett Sydrome, a postnatal neurological disorder that mostly affects females and that does not yet have a cure.

Sen. Kenny Yuko, D-Cleveland, plans to introduce legislation to designate the month of October to draw awareness to the disorder, with hopes of increasing support for medical research.

Hundreds of Ohioans have been diagnosed with Rett Syndrome.

“It’s often described as they’re trapped in their own bodies,” Yuko said, adding, “We’ve got to do more to raise awareness of this genetic disorder.”

Brynn’s mom, Kristin Hileman, was there for the announcement of the legislation.

“Rett Syndrome is truly a devastating diagnosis,” she said. “… While there are many diseases and disorders all vying for awareness during that month, we hope that an increase in focus on Rett Syndrome will lead to a better future for girls in our state diagnosed and yet to be diagnosed.”

She added, “Thank you for believing in these girls, who need us to rally for them.”

Marc Kovac is The Vindicator’s Statehouse correspondent. Email him at mkovac@dixcom.com or on Twitter at OhioCapitalBlog.