Dravet Syndrome Foundation

Did you know? Most children with Dravet syndrome have typical health and development prior to their first seizure. Share this fact to inform and strengthen our community! 💜

Shoutout to Shawna & Jeff Davis, Lynne & Elliot Howard, Sarah & Marcus Reyes, and Jen & Mike Shaughnessy—our dream team who made The 13th Annual Double Down for Dravet unforgettable! 🙌 Because of your passion and dedication, we raised an incredible $156,801.40—130% of our $120,000 fundraising goal—to fuel our fight against Dravet syndrome. Your hard work isn’t just appreciated—it’s changing lives. 💜 A heartfelt thank you to all the families and friends of these dedicated committee members for your unwavering support. You’ve made a real difference. bit.ly/3XR7hXt

💜 We know how important it is to have a doctor who truly understands Dravet syndrome. That’s why we’ve created our “Find a Doctor” tool—because every family deserves a healthcare provider who can offer the right support and guidance. If you’re searching for a specialist who gets what your Warrior is going through, this resource is here to help. If your doctor isn’t listed and would like to be, they can register to join the directory! You’re not alone in this journey, and finding the right doctor can make all the difference. Visit our website at the link in our bio to connect with experienced Dravet specialists near you. https://lnkd.in/gxQjNgSC

A huge thank you to our Title Sponsor, Jim Ellis Automotive Group, for going all in and helping Betting on a Cure be set up for success! 💜 The generous support is helping us push the odds in favor of families affected by Dravet syndrome, funding critical research and resources. We couldn’t ask for a better partner in this fight. Thank you for believing in our mission and betting on a brighter future! 📆 Date: Saturday, September 7 🕡 Time: 6:00 PM - 11:00 PM 📍 Location: Jim Ellis VW Lighthouse, Atlanta, GA https://lnkd.in/gxCKVd2C

Shoutout to Shawna & Jeff Davis, Lynne & Elliot Howard, Sarah & Marcus Reyes, and Jen & Mike Shaughnessy—our dream team who made The 13th Annual Double Down for Dravet unforgettable! 🙌 Because of your passion and dedication, we raised an incredible $156,801.40—130% of our $120,000 fundraising goal—to fuel our fight against Dravet syndrome. Your hard work isn’t just appreciated—it’s changing lives. 💜 A heartfelt thank you to all the families and friends of these dedicated committee members for your unwavering support. You’ve made a real difference. bit.ly/3XR7hXt

Has Dravet Syndrome Foundation made a difference in your life? 💜 We’d be so grateful if you could share your story with us. Your reviews help others find the support they need and allow us to keep making a positive impact. We’re aiming for 10 new reviews to earn our 2024 Top-Rated Nonprofit badge, and we can’t reach this goal without your help! Your feedback is invaluable. Thank you for being such an important part of our community! 👉 https://lnkd.in/giAeb_Pr

We are proud to announce a new partnership between the Dravet Syndrome Foundation and Mason’s Movement Foundation. This collaboration is focused on supporting bereaved families within our community who have faced the unimaginable loss of a child or sibling to Dravet syndrome. Through the Good Mourning Project, Mason’s Movement offers resources like carefully selected grief books and remembrance items for parents and siblings. Together, we aim to provide light in a time of darkness for those who need it most. Amanda and Matt Langford, founders of Mason’s Movement, shared, “When we lost Mason, the support we received from our community was invaluable. We are now honored to help others navigate their grief journey.” Mary Anne Meskis, Executive Director of DSF, adds, “We deeply appreciate the Mason’s Movement Foundation for offering this invaluable support. Their assistance brings comfort during such a challenging time.” Learn more about this partnership and how it will impact our Dravet families: bit.ly/4dy960E

A huge thank you to Eric and Dani Fey of Louisiana for hosting a Bourbon raffle fundraiser in honor of their daughter, Adeline! Thanks to their dedication and the community's amazing support, they raised an incredible $16,220 for Dravet syndrome! Your efforts are truly making a difference, and we couldn’t do this without the passion and commitment of families like yours. Together, we are one step closer to finding a cure and improving the lives of those affected by Dravet syndrome. 💜

We are pleased to thank the generous Platinum sponsors of DSF’s 2024 Signature Gala: A Night Under the Stars! With the dedicated support of The Riley/Ledding Family Trust, Dravet Syndrome Foundation is able to fund more research and continue making progress towards a cure. Thank you for your partnership! 📆 Date: Saturday, September 14 🕡 Time: 6:30 PM - 10:30 PM 📍 Location: The Garden, Walnut Creek, CA Learn more about the event, purchase a ticket, or donate here: bit.ly/3WiQj2V

Attention Dravet syndrome caregivers! This Monday, Aug. 26, we invite you to our monthly Chat & Connect session, a welcoming space to exchange advice, receive support, and ask any questions you have. Drop in at your convenience and stay for as long as you want. It's all about connecting with others who truly understand; no formalities needed. 💜 Daytime: bit.ly/3z8fexa Evening: bit.ly/4aZsWjG #DravetCommunity #DravetSupport #CureDravet #DravetSyndrome #RareDisease