Do you have a Seizure Action Plan? A seizure is a medical emergency. A Seizure Action Plan (SAP) incorporates tailored guidelines on how to respond during a seizure. It includes patient-specific information that can assure quick and appropriate intervention. For patients with Dravet syndrome, a SAP is an important management tool. Its development should involve […]
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Patient Assistance Grant Program Opens March 1 Do you need assistance in obtaining items that are not covered through insurance? DSF is here to help you. Caregivers of patients worldwide that are members of the DSF Family Network are eligible to apply for needed equipment and devices of up to $1,500 per year, with a
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Give Up Your Cup Each March, DSF challenges you to Give Up Your Cup. This annual virtual fundraiser asks you to give up your coffee, tea or other “cup” for one day, one week, one month or anything in between, then donate what you would have spent to DSF. You can help to raise funds
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Voice of the Patient report Missed our Externally-led Patient Focused Drug Development (EL-PFDD) Meeting on Dravet Syndrome on February 3, 2022? We are now working on our Voice of the Patient report, which will be developed based on the content of the meeting and sent to the FDA and housed on the DSF website. This
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Apply to be a Parent Ambassador! In 2010, our Dravet Syndrome Foundation founding members established our first online support group. What started with roughly 100 members in the first few months has now grown to over 3,000 members as of January 2022! In 2017, we launched the DSF Family Network (DSFFN). We created 5 additional
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Particpate in the EL-PFDD on Dravet Syndrome Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting on Dravet Syndrome EL-PFDD meetings bring together patients and caregivers, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. DSF will be hosting a virtual EL-PFDD on Dravet syndrome on February 3,
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2021 Facebook Birthdays We set ourselves a sizable goal in 2021 of raising $100K for Facebook Birthdays! Thanks to everyone that used their birthday as a way to spread awareness and raise funds. While we were just shy of reaching our $100k goal, over 300 individuals still raised an incredible $96k!!! Every gift, no matter
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Meet Scott Baraban, PhD In this Researcher Spotlight meet DSF’s Scientific Advisory Board (MAB) member, Scott Baraban, PhD. Dr. Baraban studies Dravet syndrome using zebrafish, and his laboratory’s work has led to advancements in drug discovery and repurposing for Dravet syndrome. DSF funded Dr. Baraban’s zebrafish drug screens through our grants program in 2011, and currently, some
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Meet Elaine Wirrell, MD In this Researcher Spotlight meet DSF’s Medical Advisory Board (MAB) member, Elaine Wirrell, MD. Dr. Wirrell is passionate about improving the lives of children with epilepsy, appreciating the tremendous impact this condition has on the entire family, and the critical importance of addressing seizures and comorbidities. Last month, Dr. Wirrell was
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12th Annual Research Roundtable The Dravet Syndrome Foundation was honored to host our 12th annual Research Roundtable on December 2nd, 2021, the evening prior to the annual American Epilepsy Society (AES) Meeting. Following the 2020 virtual-only event, it felt electric to be gathered together in person to discuss advances in Dravet syndrome research. This annual
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