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
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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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Share with Your Network on Social Media You can amplify the epilepsy community’s statement opposing cuts to the CDC, medical research, and ACHDNC by posting on your social media channels. Graphics and sample social media content dveloped by the Epilepsy Foundation can be accessed in this public folder: https://bit.ly/accep25
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Email your Members of Congress! One of the easiest and quickest way to take action is to use the Epilepsy Foundation’s tool to email your members of Congress about your concerns. Just enter your address and a few clicks later, you can send an email to your U.S. Senators and Representative. We strongly encourage advocates
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June 23 is Dravet Syndrome Awareness Day! A great way to spread awareness is to have your city or state make a proclamation in honor of the day. We have prepared this guide to help if you’d like to see if you can make this happen in your local community! If you are interested in
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