Dravet Syndrome and COVID-19 Vaccination

By |2021-08-13T01:15:21-05:00August 13th, 2021|Categories: Decoding Dravet Blog|

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 in this disorder. Early childhood [...]

Is epilepsy surgery for seizure control an option for individuals with Dravet syndrome?

By |2021-07-28T14:20:32-05:00July 30th, 2021|Categories: Decoding Dravet Blog|

DSF has received many questions about epilepsy surgery for patients with Dravet syndrome recently. If this is something you are considering for your child, it is crucial to know your options and to learn more about what we currently know regarding surgery for patients with Dravet syndrome. It is important to remember that every patient’s [...]

The VIP Sibling Project

By |2021-08-05T10:28:14-05:00July 23rd, 2021|Categories: Decoding Dravet Blog|

All rare epilepsy families face challenges. Caring for a child with a rare epilepsy requires considerable energy, time, and flexibility. And that constant care has an impact on every member of the family. Siblings who have a brother or sister with a rare epilepsy are often unselfish, dedicated, and demonstrate an amazing ability to see [...]

Be Seizure Ready for Back to School!

By |2021-07-16T07:25:27-05:00July 16th, 2021|Categories: Decoding Dravet Blog|

The Seizure Action Plan Coalition is excited to announce our 2021 Back to School initiatives: In 2020, the Seizure Action Plan (SAP) Coalition was formed by the Dravet Syndrome Foundation, the LGS Foundation, and the TSC Alliance to fill an unmet need in the epilepsy community. This collaborative effort is designed to raise awareness of what [...]

Miles for McCall

By |2021-07-08T11:55:31-05:00July 9th, 2021|Categories: Decoding Dravet Blog|

We are excited to announce a new multi-year fundraising 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 converted to competitive ultra-cycling in 2020, Dan has a full schedule [...]

Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the Power of Knowledge to Enhance Diagnosis, Reduce Seizures, and Improve Overall Quality of Life for All

By |2021-06-12T13:15:14-05:00June 25th, 2021|Categories: Decoding Dravet Blog|

It is difficult to truly gauge both the financial costs and the significant humanistic toll of caring for someone with Dravet syndrome. Prolonged or repetitive seizures diminish quality of life not only for patients, but also for parents and caregivers, who may suffer loss of time from work, loss of employment, increased anxiety, and social [...]

DSF is looking for Board Members!

By |2021-06-17T12:48:20-05:00June 18th, 2021|Categories: Decoding Dravet Blog|

Are you looking for a way to truly have an impact on the future of Dravet syndrome? DSF is currently seeking professional, committed individuals who are passionate about finding a cure for Dravet syndrome for their Board of Directors. Board positions are a voluntary, three-year term that can be served from anywhere in the United [...]

Join us at our Dravet Discussion Lounges at this Year’s Conference!

By |2021-06-18T10:53:54-05:00June 11th, 2021|Categories: Decoding Dravet Blog|

With our conference in a virtual format this year, we wanted to find a creative way to see and chat with one another until we can meet again in person next year. We will be hosting our Dravet Discussion Lounges from 7-9pm ET on Friday, June 25th and Saturday, June 26th, for all registered conference [...]

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