With the constant care demands of your loved one with Dravet syndrome, it’s understandable that transition planning might not even be on your radar. Transitioning to adulthood is a complex, often overwhelming, and deeply emotional process. The journey can look very different from one household to the next, as each young adult’s abilities, needs, and future […]
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In 2025, the National Institute of Neurological Disorders and Stroke (NINDS) marks its 75th anniversary, celebrating a legacy that began in 1950. This milestone underscores NINDS’s mission to advance understanding of the brain and nervous system and reduce the burden of neurological disease through research, training, collaboration, and outreach. Since its founding, NINDS has driven
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Lenny Lopez Leonardo (Lenny) was born in San Juan, Puerto Rico. He moved to Massachusetts as a young boy where he currently resides with his wife Amy and their two adopted children Becca and Isaias. At 16 months old Isaias was diagnosed with Dravet Syndrome after suffering from several different seizure types. Lenny has helped
Pablo Pluma Pablo was born in Greeley, Colorado, and raised in the nearby small town of Kersey. For the past 27 years, he has worked in manufacturing as a supervisor at Walker Mowers.He met his wife, Perla, when they were just 12 years old, and this July, they’ll celebrate 20 years of marriage. Together, they
Sirena Denbow Originally hailing from the beaches of Southern California, Sirena was transplanted to Washington State in 1986. After high school she earned her AA through Green River Community College and her bachelor’s degree from The Evergreen State College. She is currently finishing her final year of Washington State’s APR 6 law clerk program, with
Sasha Deen-Damodaran Sasha was born in The Bronx, NY, moved to Queens and eventually landed in Round Rock, TX where she has called home for the past 19 years. She graduated from Martin Van Buren High School and went on to earn her Bachelor’s degree in Anthropology from Queens College. After moving to Texas, she
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Melissa O’Bryan Melissa is the proud mom to four boys. Her and her husband, Jim make their home in Ketchikan, Alaska, a small island on the SE tip. Her son, Owen, was diagnosed with Dravet syndrome at three years of age. She credits awareness and research for her son’s early diagnosis. Her passion for advocacy
Fábio Nascimento is an Assistant Professor of Neurology at Washington University in St. Louis. Originally from Brazil, he completed medical school at the Universidade Federal do Paraná (UFPR) and then spent two years at the University of Toronto working as a research fellow in epilepsy genetics. Subsequently, he moved to Houston, Texas to train as
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Rare Across America is an advocacy initiative by the EveryLife Foundation that empowers you to meet with your Members of Congress at their local district offices. By sharing your personal story, you can help educate them about the key issues affecting the rare disease community. The program also provides training to ensure you feel confident
Rare Across America – August 2025 Read More »
Request Meetings with Your Congressional Offices If you have more time, requesting and holding a meeting with your congressional o—ces gives you more time to explain your concerns, ask questions, and ask for their support. For each member of Congress you reach out to, it can take at least one hour total to request the
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