A Scholarship to Remember Children Taken by Jordan’s Syndrome

Jordan’s Guardian Angels, a nonprofit organization that supports the Jordan’s syndrome community, has recently announced a new scholarship that will honor children that have died as a result of being born with the disorder. The scholarship, named the Shine Like Ozzie Scholarship, is named after Ozzie Deason, who passed away at age three as a result of the disease. You can learn more about Ozzie’s story here.

About Jordan’s Syndrome

Jordan’s syndrome, also called PPP2R5D-related intellectual disability, is a rare genetic disorder that is inherited in an autosomal dominant fashion. It is a neurodevelopmental disorder that can range widely in severity, though symptoms are typically present early in life. Only around 250 cases of the syndrome have been recognized. All cases are linked to mutations affecting the genes PPP2R5D, PPP2R5C, and PPP2R1A. Symptoms of Jordan’s syndrome include epilepsy, autism-like features, macrocephaly, parkinsonism, hypotonia, intellectual disability, and delayed or impaired speech. While some of the symptoms of the illness can be managed using measures such as speech therapy, occupational therapy, or physical therapy, there is no disease-modifying treatment available, and the molecular mechanism of the syndrome remains unknown. Only a genetic test can diagnose the disease. To learn more about Jordan’s syndrome, click here.

The Scholarship

This scholarship is valued at $1,000 for a student in an undergraduate or graduate program that is studying in any field related to epilepsy. While epilepsy is not always present in Jordan’s syndrome, the symptom was a major problem for Ozzie:

“The Shine Like Ozzie scholarship is extremely meaningful to our family for so many reasons. Epilepsy ravaged our daily lives and stole so much from Ozzie, and we understand how critical it is for families to find the appropriate epilepsy care.” – Leah Deason, Ozzie’s mother

Researchers are hard at work trying to learn more about Jordan’s syndrome so that a treatment or cure can be developed successfully. While only a small number of cases have been officially diagnosed, scientists estimate that there could be as many as 200,000 people alive with the disorder. 

To learn more about the Shine Like Ozzie Scholarship and apply, click here. The deadline to apply is February 11, 2022.

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