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 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 …
“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 dÃa una cura para …
Nuevo grupo de apoyo en lÃnea 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 »
Dravet Syndrome Awareness Month takes place each June in the U.S., and International Dravet Syndrome Awareness Day is observed on June 23rd. This year, we are once again recognizing those that we have lost on our third annual Remembrance Day on June 15, 2023. Dravet Remembrance Day is a time for our community to reflect …
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 …
June is Dravet Syndrome Awareness Month in the U.S. By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that patient families have the information they need to manage their loved one’s care; and reduce the feelings of isolation faced by patients and their families. We …
Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. These workshops take place on odd-numbered years, opposite of our …
As we edge closer to our second Steps Toward a Cure event benefiting the Dravet Syndrome Foundation, I feel led to tell Will’s story and how we got here – fighting for a cure through fundraising. Will was born a healthy baby. He was right on track developmentally until one day, at 3 months old, …
One of our very own patients deserves special recognition for her recent fundraising efforts. Bridget Fullam, an 18 year old living with a Dravet syndrome diagnosis from Montvale, NJ, has helped DSF secure $100,000 through two grants from The Marilyn Lichtman Foundation for our research grant program. Bridget met the President of the Foundation in …
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