When a family first receives a diagnosis of Dravet syndrome for their child, they may feel overwhelmed and unsure where to begin. Often your first instinct is to turn to the internet for more information. But with a rare disease such as Dravet syndrome, general information you may find can be out of date, based […]
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Dance for Dravet Join us for a night of fun & fundraising at Dance for Dravet in Honor of Anna. Taking place at Third Degree Glass Factory in St. Louis, Missouri, the evening includes appetizers, dinner, drinks, dancing, and silent and live auctions. Tickets are now on sale for $100 per person. Purchase your tickets
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Surgery & Procedures in Dravet Syndrome Patients with Dravet syndrome often require a surgery or other invasive procedure at some point in their life. While there are no specific surgical procedures that are specifically required due to the diagnosis of Dravet syndrome, there are some procedures that occur more commonly, including: feeding tube placement (i.e.,
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Dravet Syndrome and COVID-19 Vaccination As the COVID-19 pandemic continues, vaccination has become a major tool in combating the spread and mitigating the symptomatic infections caused by the novel coronavirus. Vaccination can be a topic of particular concern for individuals with Dravet syndrome (DS) and their families given that vaccines are a common seizure trigger
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Meet Dan Hartley, his daughter Bri, and McCall! In this Community Spotlight meet Dan Hartley and learn about his new multi-year fundrasising and awareness event – Miles for McCall! Dan Hartley is a 49-year-old, US Navy Veteran and business owner, who is a former semi-professional ultra-runner who has competed in numerous ultramarathons and 100-mile races. Having
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Be seizure ready with the back to School Initiative! The Seizure Action Plan Coalition recently announced their 2021 Back to School initiatives! Watch the SAP Coalition Town Hall, ABC to SAP: Why Your Child Needs a Seizure Action Plan Webinar, and learn from an expert panel. You will hear about SAPs from a doctor’s point
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Meet Sarah and Avery! In this Community Spotlight meet Sarah Lango and her daughter Avery. For Dravet Awareness month, Sarah reached out to several local businesses in her small town to raise awareness for Dravet syndrome and Avery’s journey. Each business handed out brochures and postcards. In many cases, businesses donated a portion of sales
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Remembering those we have lost In this Community Spotlight we honor those that we have lost to Dravet syndrome. Evan Nicholas Bartley Zackary Blake Bell Tanner Berry Gabrielle Alexis Berryman Ella Elizabeth Brearley Megan Alexandra Buss Dawson Luke Causey Bethany Childers Yotom Cohen Scott C. Crossland Clover Dohman Tyler Francis Eimont Charlotte Figi Alex Michael
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Meet our Dravet Warriors! In this Community Spotlight meet our Dravet Warriors! Our Dravet Stores page is such an integral part of our website. It is a place to direct family and friends to learn more about our children and their journey along with Dravet syndrome itself. However, it also serves as a starting point
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Meet Tiffany! In this Community Spotlight meet Tiffany Rowan. Tiffany’s daughter, Laney, had her first seizure at 4 months old and was diagnosed with Dravet syndrome at 6 months old. Tiffany struggled with having to administer multiple medications several times a day to her infant daughter. Between not being able to open capsule medications easily
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