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 [...]

Baxter Women in Business

By |2019-10-16T14:44:09-05:00October 16th, 2019|Categories: Our Community|

Thank You Baxter Women in Business! Baxter Women in Business is a group of women in the Baxter Village area of Fort Mill, SC. Their focus is on supporting their neighborhood by helping fellow women in business and offering their services to Baxter Village and surrounding communities. The Baxter Women in Business hosted [...]

Thank You Aaron Family!

By |2019-09-13T11:54:07-05:00September 15th, 2019|Categories: Our Community|

Aaron Family Raises Over $16,000 Jeff Aaron and his wife, Karina (a Sergeant and a Detective for the Chicago Police Department) are one tough team. They have stepped up to the plate to raise funds and awareness for the Dravet Syndrome Foundation in honor of their son, Jackson, who is now 5 years [...]

Marketing Research Study

By |2019-08-12T15:30:57-05:00August 15th, 2019|Categories: Our Community|

FOCUSED Marketing Research Study FOCUSED Marketing Research has a 20-25 minute on-line market research survey this Fall for parents and/or caregivers of patients with Dravet syndrome that pays $100 for your time. If you are interested in this, or future paid and confidential market research studies, you can opt-in to participate by clinking [...]

Double Down Beantown

By |2019-07-15T16:37:45-05:00July 16th, 2019|Categories: Our Community|

2019 Double Down Beantown – Boston Bets Against Dravet Congratulations and thank you Karina & Daniel Fischer, Lauren & Jon Forker, Stephanie & Josh Goldman, Abby & Micah Hemani, Amy & Lenny Lopez, and Barbara & John Swoyer. These 6 Boston area families joined forces to host an amazing first time gala fundraiser [...]

#MemberMonday

By |2019-05-17T13:40:17-05:00June 17th, 2019|Categories: Our Community, Uncategorized|

Meet Southeast Region Parent Ambassador, Kimberly Brorson! This #MemberMonday meet Southeast Parent Ambassador, Kimberly Brorson! Kimberly resides in Fredericksburg, VA with her husband Bendik, Dravet child Lucy, Amelia and twin girls Madeline and Elise. Post Dravet diagnosis for Lucy, Kimberly took leave as a commercial pilot to be a full time care taker for [...]

Researcher Spotlight

By |2019-06-13T16:58:26-05:00June 15th, 2019|Categories: Our Community|

Danielle Andrade, MD, MSc, FRCPC Please welcome our newest Medical Advisory Board (MAB) member, Danielle Andrade, MD. Dr. Andrade has devoted her time and medical expertise to improving the lives of those afflicted with Dravet syndrome and associated epilepsies. As a MAB member, she offers input on clinical trials that impact the Dravet [...]

#MemberMonday

By |2019-05-17T13:52:55-05:00June 10th, 2019|Categories: Our Community, Uncategorized|

Meet Midwest Region Parent Ambassadors, Kathy and Bob Dodd! This #MemberMonday meet Midwest Parent Ambassadors, Kathy and Bob Dodd! Bob and Kathy live in a suburb of Chicago with their 2 daughters, Cameron and Stacy. Stacy, now age 20, had her first seizure in January 1999 and was diagnosed with Dravet Syndrome in August [...]