Eliana is turning 12! As many of you know, Eliana was one of the first children in the world diagnosed with PURA syndrome, a rare genetic neurological condition. Although the first few years of Eliana’s development was slow, she made steady gains. But all that changed when her epilepsy started at around 5 years old. She is no longer the smiley happy girl that she used to be. She is often very tired, and the seizures have affected nearly every aspect of her life, including her ability to eat. Over the past few years, Eliana has undergone multiple procedures, including a Vagus Nerve Stimulator and the placement of a feeding tube.

As Eliana turns 12, the age of Bat Mitzvah, we are deeply aware that she cannot perform mitzvot in the traditional sense. Still, this moment carries meaning and in honor of Eliana turning 12 we have decided to try and raise $12,000 for the PURA Syndrome Foundation.

The PURA Syndrome Foundation is dedicated to advancing research toward effective treatments and, ultimately, a cure for PURA syndrome. They fund scientific research, bring together clinicians and researchers, and work to accelerate progress for children like Eliana. Just as importantly, the Foundation provides education, resources, and connection for families navigating this rare and complex diagnosis. By donating, you are helping to ensure that families like ours are not facing this journey alone and that progress toward treatment continues.

Thank you for supporting Eliana, honoring this moment in her life, and helping us use her Bat Mitzvah to make a meaningful impact.

Eliana Brilliant Fundraiser

By PURA SYNDROME FOUNDATION

Eliana Brilliant Fundraiser

Help Celebrate Eliana's Bat-Mitzvah and support our PURA Syndrome Community!