The Naomi and Barney Silverman
Madison was six years old when she was diagnosed with epilepsy and had to grow up pretty quickly. Recounting her experiences, Madison is matter-of-fact about all she endured in the search for a treatment that worked: one medication after another, allergic reactions that altered her personality, surgeries – seven in all - including one major complication, and endless medical tests. Even now, at age 17, her seizures are not fully controlled.
For Madison, being bullied at school is a childhood trauma that stays with her. “It all happened,” she explains, “because my peers were not educated about what a seizure looked like.” It was during that time that her family called the Epilepsy Foundation of Long Island to help educate students and school staff. Our Community Educator presented a puppet show designed to teach children about epilepsy and seizures to her classmates. After the puppet show, Madison explains, “I was never bullied by my peers again.”
Her early experience learning to advocate for herself began a trajectory for Madison that culminated in 2018 when she represented all Long Islanders with epilepsy at Teens Speak Up! – a program sponsored by the Epilepsy Foundation annually in Washington, DC. There, she advocated for all children and adults with epilepsy, along with dozens of teens from across the country; meeting with legislators and lobbying for increased funding for research, education and legislation to support people with epilepsy.
Throughout all the ups and downs of Madison’s journey, her parents, Orrin and Marla, have been steadfast advocates for Madison and tireless investigators for information about epilepsy. Orrin and Marla also embraced the mission of the Epilepsy Foundation of Long Island and allowed our staff to put our mission to work – providing them with information, connecting with advocacy efforts, and offering the opportunity to educate Madison’s classmates. Orrin and Marla have become strong supporters of our efforts, as well, and helped to connect us with valuable resources among their network.
When asked about her thoughts for the future of more funding and support for epilepsy, Madison is energized, “I am excited about what the future may have in store for advances in epilepsy, and I am confident that I will be at the front-end of these monumental improvements.” She explains further, “I hope to be not only my own advocate, but a voice for others who may be struggling with this disorder.”
For their friendship, support and enthusiastic partnership in our efforts to ensure that children and adults with epilepsy can live life without limitations, the Epilepsy Foundation of Long Island is honored to recognize Madison, Marla and Orrin Schmidt as the 2020 Naomi and Barney Silverman Family of the Year.