|Posted:||October 23, 2018 01:13 PM|
|From:||Representative Stephen Kinsey and Rep. Maureen E. Madden|
|To:||All House members|
|Subject:||Resolution: “Ohtahara Syndrome Awareness Day”|
|In the near future, we will be introducing a resolution designating November 15, 2018, as “Ohtahara Syndrome Awareness Day” in Pennsylvania.
Ohtahara syndrome is a rare neurological disorder that is characterized by seizures and affects infants within the first three months of life. The cause of this syndrome often cannot be determined and treatment can be ineffective in controlling seizures. Some children die before the age of two and those that do survive are typically left with severe physical and cognitive disabilities.
As Ohtahara syndrome is a very rare disease, efforts to understand this condition are often gradual and receive little awareness. As such, it is crucial that we raise awareness of this condition and acknowledge the efforts made by families and researchers to discover more effective treatments and find a cure. Please join us in recognizing all those affected by Ohtahara syndrome by designating November 15, 2018, as “Ohtahara Syndrome Awareness Day” in Pennsylvania.
Thank you for your consideration.
Introduced as HR1182