Ava Shaye Gumson, the eldest child of Adam and Lissa Gumson of JUPITER LAW CENTER, has a very rare congenital neurological seizure disorder called Aicardi Syndrome. In fact, it’s so rare that Ava is one of approximately 4,000 children worldwide who have been diagnosed with Aicardi Syndrome which inhibits the normal development of motor skills, sight and speech, causing mild to profound developmental delays.
After attending a conference by the Aicardi Syndrome Foundation in 2004 and meeting other struggling families, Adam and Lissa hosted an event to raise money and awareness of the disorder. Since it is so rare, research into its cause, treatment and/or cure is still funded primarily by passionate family members like the Gumsons.
That initial event is now a yearly signature Halloween Costume Party. To date, it has raised almost $600,000 to benefit the Foundation, a tax-exempt non-profit which strives to make the lives of Aicardi-affected girls more functional and fulfilling. The money raised funds research grants at both Baylor University and the University of California at San Francisco, as well as assisting families in obtaining equipment that otherwise may not be affordable. All contributions go directly to the cause, as the Foundation is made up entirely of volunteers.
To learn more about Aicardi Syndrome and/or meet some of the affected children and their families, visit The Aicardi Syndrome Foundation or Our Aicardi Life.