Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet Blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
The fulfillment of our mission is only possible thanks to the generous support of our community. But did you know that there are many unique ways to support our vital work, outside of a personal donation? Be a Fundraiser: Creating a personal campaign page gives you a chance to do something small, but make a […]
Unique Ways to Support the Mission of DSF Read More »
We are honored to have the opportunity to auction off a custom painting created by Pindar Van Arman, an award winning AI artist who builds, codes, and experiments with robots that paint in a variety of styles. Pindar worked with Dr. M. Scott Perry to bring an AI project, Spikeangelo, to Cook Children’s Medical Center
Pindar Van Arman Auction benefiting DSF Read More »
Haga clic aquí para leer en español DEI what does it stand for? We recently discussed the letter ‘E’ and shared how Equity is a part of our community. To complete our discussion and meaning of this acronym, we will discuss the letter ‘I’. Inclusion: the act of being included In 2009 a group of parents started
Understanding DEI – Inclusion Read More »
Haga clic aquí para leer en español DEI what does it stand for? We recently discussed the letter ‘D’ and shared how Diversity is a part of our community. Continuing our discussion, we will discuss the letter ‘E’. Equity: the state of being equal, especially in status, rights, and opportunities In the late 1800s, the supreme court
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Haga clic aquí para leer en español In January 2023 I had the pleasure of joining the DSF team as the DEI Coordinator. The acronym ‘DEI’ may not be familiar to all, so let’s take a dive into each letter to understand what exactly DEI is. DEI stands for Diversity, Equity, and Inclusion: Diversity: the
Understanding DEI – Diversity Read More »
The First Annual Marlins for Mason Billfish Release Tournament will be held August 4th and 5th in Ocean City, Maryland. Marlins for Mason is a non-profit marlin release tournament benefitting the Dravet Syndrome Foundation. Mighty Mason Prather is a 5-year-old Dravet warrior who lives in Ocean City, Maryland. Mason had his first seizure at 4 months old and was diagnosed
Today’s blog will mostly focus on SUDEP, or Sudden Unexpected Death in EPilepsy. This topic is hard to talk about, but in the rare epilepsy community, these hard conversations represent realities we are faced with almost daily. Just last month we recognized June 15th as Dravet Remembrance Day as part of Awareness Month; a day
Talking About SUDEP Read More »
“Aumentar la esperanza y cambiar vidas a través de la investigación” Esta es la declaración de la misión de Dravet Syndrome Foundation. Desde nuestra fundación en 2009, hemos involucrado y educado a pacientes, familias, médicos, investigadores, socios de la industria y otros para imaginar y luchar por mejores tratamientos, y algún día una cura para
Nuevo grupo de apoyo en línea de hablar español de DSF en Facebook Read More »
The first question that is often asked by newly diagnosed families is when there will be a cure for Dravet syndrome. Rare diseases face common research challenges and Dravet syndrome is no exception. With a small patient population, research funding is typically non-existent and patient data is limited, making research difficult and financially unappealing to
Can Dravet syndrome be cured? Why research is so important. Read More »
Last year for Dravet Syndrome Awareness Month, we debuted Dye it for Dravet, after DSF Parent Ambassador Jen Kuhn and her hair stylist, Kelsi Morgan of PRIM Beauty Bar, came up with the idea for this fun and colorful fundraiser. This June, the challenge is back for the bold and the brave who want to
Dye it for Dravet is back! Read More »
