New Board Members

By |2020-06-15T14:44:32-05:00June 16th, 2020|Categories: Our Community|

Welcome New Board Members Welcome to Our New Board Members! Please join us in welcoming our two newest board members, Ashley Kerns and Dr. Joseph Sullivan, who officially began their terms on April 1, 2020. Ashley resides in Westlake, Louisiana with her three children, Michael (age 9), Samuel (age 6), and Katie (age 1). Katie was [...]

#MemberMonday Spotlight

By |2020-06-15T13:44:05-05:00June 16th, 2020|Categories: Our Community|

Meet Tina & Ryan! This #MemberMonday meet Ryan and his mom, Tina McDermott. Tina is an active member in the Dravet syndrome community. She serves as a DSF Family Ambassador in the midwest region and also as a DSF Social Ambassador. Her youngest son, Ryan, was diagnosed with Dravet syndrome in 2012 at [...]

Shine Forward With Dravet

By |2020-05-14T11:18:20-05:00May 15th, 2020|Categories: Our Community|

Zogenix Offers New Website Shine Forward With Dravet is brought to you by Zogenix, Inc. Shine Forward With Dravet is a website dedicated to sharing resources and inspiration for families living with Dravet syndrome. Whether you are a parent, sibling, friend, or other family member of someone with Dravet syndrome, Shine Forward With [...]

COVID-19 & Conference

By |2020-03-18T11:29:28-05:00March 18th, 2020|Categories: Our Community|

COVID-19 & DSF Conference Update Our team at DSF understands that this is a frightening and uncertain time for our patient families with the spread of coronavirus (COVID-19) in the U.S. We are continuing to monitor COVID-19 via the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). At [...]

Copy of COVID-19 & Conference

By |2020-03-18T11:00:52-05:00March 18th, 2020|Categories: Our Community|

COVID-19 & DSF Conference Update Our team at DSF understands that this is a frightening and uncertain time for our patient families with the spread of coronavirus (COVID-19) in the U.S. We are continuing to monitor COVID-19 via the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). At [...]

Copy of COVID-19 & Conference

By |2020-03-18T11:00:52-05:00March 18th, 2020|Categories: Our Community|

COVID-19 & DSF Conference Update Our team at DSF understands that this is a frightening and uncertain time for our patient families with the spread of coronavirus (COVID-19) in the U.S. We are continuing to monitor COVID-19 via the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). At [...]

Ciara’s Spirit of Hope

By |2020-02-17T10:47:24-05:00February 17th, 2020|Categories: Our Community|

Ciara's Spirit of Hope Award Nominations Nominations are now open for the 2020 Ciara's Spirit of Hope Award! From 2010-2015 the Spirit of Hope award was presented annually to volunteers at DSF’s annual gala, Ciara’s Butterfly Bash. It recognized parents, siblings, and volunteers whose dedication through service to DSF is truly outstanding and inspiring. Ciara’s Butterfly [...]

Birthday Fundraisers

By |2020-01-15T10:00:24-05:00January 15th, 2020|Categories: Our Community|

2019 Facebook Birthday Thanks We set ourselves a sizable goal in 2019 of raising $100K for Facebook Birthdays! Thanks to everyone that used their birthday as a way to spread awareness and raise funds. We not only met our goal, but we have surpassed that goal by over $27K!!! Every gift, no matter [...]

Community Thanks

By |2019-12-17T09:07:38-05:00December 17th, 2019|Categories: Our Community|

A Year of Thanks We have put our heads together to confront the many problems faced by the Dravet syndrome community and together we have done so much. You’ve stood with us along the way. These changes have happened through the unity and support of our community and because of YOU. You Bashed. [...]

Double Down Philadelphia

By |2019-11-14T08:43:47-05:00November 15th, 2019|Categories: Our Community|

2019 Double Down for Dravet: Philadelphia Thank you Jamie & Jason Cohen, Wendy & Greg Fry, Bethany & Brad Goering, Sarah & Adam Jacobs, Dana & John Keating, Laura Kennedy & Danielle Paffett, Erika & Ryan Rettew, and Alexis & Peter Shapiro. These 8 Philadelphia area families joined forces to host an amazing [...]