The VIP Sibling Project

By |2021-07-22T15:33:31-05:00July 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 [...]

Last Call to Party in Your PJs

By |2021-07-15T10:10:47-05:00July 15th, 2021|Categories: Events|

Last Call to Party in Your PJs for Dravet! It's not too late!  Register by Friday, July 16th to receive your party pack in time! Mark your calendars and join DSF on July 24th to Party in Your PJs for Dravet. We decided to bring this virtual interactive pajama party back for 2021 and YOU are [...]

Dravet Photo Diary

By |2021-07-14T13:04:57-05:00July 15th, 2021|Categories: Events|

Dravet Photo Diaries Contest Zogenix is hosting a Photo Diary charitable campaign and contest on Facebook. For every “Like” or share of a photo, Zogenix will donate $25 to both Dravet Syndrome Foundation and Epilepsy Foundation, up to $50,000 in total. At the end of the campaign on July 19, the family’s submission [...]

Board Member Opportunity

By |2021-07-15T10:49:07-05:00July 15th, 2021|Categories: Our Community|

DSF is looking for new board members! 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 [...]

Caregiver Connect Grants

By |2021-07-15T10:12:38-05:00July 15th, 2021|Categories: DSF Programs|

Caregiver Connect Grants Dravet Syndrome Foundation (DSF) has long recognized the many needs within our community, particularly the burden of caregivers. It is a lot of work, mentally and physically. Our caregiver community frequently talks about feelings of isolation, depression about the diagnosis, and anxiety over what their child’s future looks like. On [...]

Community Spotlight

By |2021-07-15T10:11:42-05:00July 15th, 2021|Categories: Our Community|

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 [...]

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 [...]

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