Aaron’s Ohtahara Foundation is proud to announce the first annual World Ohtahara Syndrome Awareness Day on November 15, 2014.
Ohtahara Syndrome is a rare form of pediatric epilepsy typically seen within the first three months of life and characterized by a burst suppression pattern on the EEG and early onset of seizure activity. This catastrophic, intractable form of epilepsy brings hundreds of seizures a day to these children; for which there is currently no cure.
Aaron’s Ohtahara Foundation, together with its board of directors, regional representatives, and families impacted by Ohtahara Syndrome have chosen November 15th to designate as World Ohtahara Syndrome Awareness Day.
November 15 will be recognized by Aaron’s Ohtahara Foundation as World Ohtahara Syndrome Awareness Day to share information about Ohtahara Syndrome and to celebrate our children, their lives and how much they have taught us. We not only want our children to be honored, but we want others to be aware of what they go through on a daily basis and how it affects them and their families.
Our goal is for all medical professionals, from doctors and nurses to physical therapists and speech therapists to learn more about the children they are working with, details about their diagnosis and other conditions that are related to Ohtahara Syndrome.
Our hope is for more research to be done on Ohtahara Syndrome and other rare forms of pediatric epilepsy. There is a need for more research as Ohtahara Syndrome is associated with several causes, some unknown. Research on Ohtahara Syndrome may also lead to more insight on other rare forms of pediatric epilepsy.
Aaron’s Ohtahara Foundation is a 501(c)3 nonprofit organization created in 2010 with the mission of offering hope to families with any child who has been diagnosed with Ohtahara Syndrome. We strive to accomplish this through support, research, education, and awareness. For more information on our organization and Ohtahara Syndrome, please visit: https://www.ohtahara.org “We Are Not Without Hope”