(L-R) Shannon Starkey-Taylor, COO of International Rett Syndrome Foundation, Senator Kenny Yuko, Brynn and Kristin Hileman at the press conference in the Senate Press Room at the Ohio Statehouse.

COLUMBUS–Joined with advocates and families, State Senator Kenny Yuko (D-Richmond Heights) held a press conference today to highlight legislation that he will soon introduce with Senator Jim Hughes (R-Columbus) that will designate the month of October as “Rett Syndrome Awareness Month.” Rett Syndrome is a postnatal neurological disorder that affects females almost exclusively and currently has no cure.

“Rett Syndrome is a devastating disease that affects families all across this state,” said Senator Yuko. “It is my hope that this bill will help raise awareness for this disorder so that one day Rett Syndrome can be the first reversible neurological disorder.”
 
Joining Senator Yuko were advocates from national organizations, including Shannon Starkey-Taylor, the Chief Operating Officer of the International Rett Syndrome Foundation doing business under 
Rettsyndrome.org. Based out of Cincinnati, they are the world’s largest private source of funds for Rett syndrome research.
 
“I want to thank Senator Yuko and Senator Hughes for bringing this legislation to the forefront,” stated Starkey-Taylor. “Advocacy and awareness are absolutely vital to helping empower families with knowledge and connectivity. It is our hope that dedicating a month to this serious disorder can help support studies and accelerate full spectrum research to cure Rett syndrome.”
 
1 out of every 10,000 female births is diagnosed with Rett Syndrome, which equates to a girl being born with the disorder every 2 hours. Those affected normally have no verbal skills or purposeful hand use, and on average about half of these individuals are unable to walk.
 
“With increased awareness of their intellectual abilities and physical therapy needs, we can further advance treatments for those who suffer from Rett,” said Kristin Hileman, who works with Girl Power 2 Cure, an organization dedicated to raising awareness and funds for treatments and a cure for Rett Syndrome.  “We will continue to advocate for our girls so that one day we can find a cure, and they will have the ability to stand here and thank you themselves.”

 
 
 
  
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