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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 hurricane cocktails, 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!
For your comfort and convenience, we have reserved a room block at a discounted rate for guests at two nearby hotels. When booking, be sure to mention the Epilepsy Foundation Eastern PA room block to receive the discount!
Le Meridien Philadelphia, Center City 1421 Arch St., Philadelphia, PA 19102 Please reserve your room by February 1st, 2024 To reserve a room, visit tinyurl.com/MG23-LeMeridien or call (215) 422-8200
The Notary Hotel 21 N Juniper St., Philadelphia, PA 19107 Please reserve your room by February 2nd, 2024 To reserve a room, visit tinyurl.com/MG23Notary or call (888) 887-8130
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).
Meet the Legislator of the Year, Representative Carol Kazeem!
Carol Kazeem a Chester city native dedicated to supporting the health, safety, and well-being of every Pennsylvanian. As a trauma outreach specialist and veteran health care worker, Carol has extensive experience working on homelessness reductions, mental and behavioral health services, adolescents with intellectual and physical disabilities, gun violence prevention, youth mentorship and raising awareness on the effects of poverty - both in the 159th Legislative District and globally. She has been internationally recognized for her work sponsoring children and their schools in several regions of Africa, helping them maintain their access to education. Carol also serves as a gun violence interventionist. Having lost loved ones to this epidemic, she helps others with similar experiences by providing social resources and trusted, trauma-informed support to residents in need.
Carol is a single mother of 2 children. Her son who is on the spectrum, experienced his first seizure in 2020. Although she had professional experience in the healthcare field it was still terrifying as a mother seeing her son have a traumatic seizure. When sending her son to school, her number one fear is school staff not having the firsthand knowledge on how to respond or support students with seizures. As a mother, Carol prays everyday that her son has the right, qualified staff around him if he happens to have a seizure so he is supported in a timely manner. She continues to educate faculty on methods that can be implemented to help students and assure families their children are safe, especially for underfunded school districts who may be limited to nurses.
"Prioritizing justice over excuses, I strive to enact positive change that will impact the people of my district. To accomplish this, I am pursuing legislative initiatives such as strengthening education equity, better models for mental health, combatting gun violence, addressing the housing crisis, criminal justice reform and raising the minimum wage. I am also pursuing a degree in the field of law."
Driven by her own personal experiences and by those of her fellow neighbors and loved ones in and around Chester, Representative Kazeem serves as an outspoken and genuine advocate for her community and across Pennsylvania. She is currently working to spearhead the amendment of the DOMinate Epilepsy Law, assisting the EFEPA Advocacy Committee in solidifying seizure-safety in schools in Pennsylvania. We are honored to have her at this year's Gala as the Legislator of the Year!