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You can still participate in the auction!We're making our return to Vie by Cescaphe (600 N Broad Street) in Philadelphia for the 17th annual Mardi Gras Gala! Join us on Friday, March 1st, from 7 pm-midnight for the signature black-tie gala inspired by the traditional New Orleans celebration. The dazzling evening features an open bar complete with hurricanes, a three-course French Creole dinner, lively entertainment, and dancing to a seven-piece band. Plus, we'll celebrate the local epilepsy community while recognizing our Honorees and the EFEPA's accomplishments this year.
So, dust off your dresses, pick out your favorite, glittery mask and reserve your seat now for the biggest night of the year!
Meet this year's Queens of Mardi Gras, Jess Rosini & Beth Scolis, educators, advocates, champions, and loving relatives.
Mother, Jess, and Grandmother, Beth, are fierce advocates for nine year old Dominic and other young epilepsy warriors who face similar challenges.
Dominic had his first seizure in August 2017, embarking on a long road of hospitalizations, ambulance rides, doctors appointments, medications, and more tests than any nine-year-old should endure. At its peak, Dominic was having 1,000 seizures a day. He was eventually diagnosed with Doose Syndrome/Myoclonic Astatic Epilepsy, a rare and severe form of childhood epilepsy that is notoriously resistant to medication.
After Dominic's diagnosis, Jess & Beth began to discover just how misunderstood the disorder was and made it their mission to make a change. In the last six and a half years, the family has not only organized educational and fundraising events, but led the charge in creating seizure-safe school legislation in Pennsylvania. Thanks to their hard work, Governor Wolf signed Act 84 into law in 2020, thus creating the DOMinate Epilepsy Law in Pennsylvania. This legislation promotes the training of school personnel in seizure recognition & response, to assure a safe environment for all. The family is continuing to work to strengthen the law to require training amongst school personnel.
Both Jess and Beth are honored to be this year's Mardi Gras Royalty!
Meet this Year's Medical Honoree, Ingo Helbig, MD!
Ingo Helbig, MD, is a child neurologist and epilepsy genetics researcher at the Children's Hospital of Philadelphia. He received his MD from the University of Heidelberg, Germany, and completed his pediatric and child neurology residency in Melbourne (Australia), Kiel (Germany), and Philadelphia (USA).
He is currently an Assistant Professor of Neurology and Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and the Children's Hospital of Pennsylvania. His group has contributed to the major gene discoveries in human epilepsies over the last decade and is currently expanding its focus to apply data-driven approaches to understand epilepsy phenotypes. Dr. Helbig co-leads the Epilepsy Gene Curation Panel of the ClinGen consortium and is the Director of Genomic Science and Fellowship Director of the Epilepsy NeuroGenetics Initiative at Children's Hospital of Philadelphia, one of the world's largest epilepsy genetics programs with more than 1,000 new epilepsy genetics evaluations annually. Dr. Helbig is also well known for his neurogenetics blog, "Beyond the Ion Channel" which can be found at www.epilepsygenetics.net. As of February 2023, Dr. Helbig has also taken the role of the Clinical Director of the Penn/CHOP Center for Epilepsy and Neurodevelopment Disorders (ENDD).
$150000 Goal
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$139298
Total Raised