Dravet Syndrome Foundation

Because everyone deserves a place to play! Bella and Katelin of ThunderRidge High School are raising funds to build inclusive playground equipment at Toepfer Park in Highlands Ranch, Colorado. Inspired by Bella’s sister Macy, who has Dravet syndrome, these two philanthropic seniors are determined to create a fun, safe place where everyone can play together in their community. You can help make playtime accessible for more kids like Macy by liking, sharing, or donating today! Every contribution counts.💜 Check out Project PLAY. here: https://bit.ly/3BNA6v3

Today, we stand with our partners in recognizing #SUDEPActionDay — a day focused on raising awareness about Sudden Unexpected Death in Epilepsy (SUDEP) and motivating action to save lives. Despite being one of the most tragic risks of epilepsy, too many families remain uninformed. This year’s theme, Our Risk, Our Rights, emphasizes the right of every person impacted by epilepsy to understand their risks and learn the steps they can take to reduce the chances of SUDEP. Join us in spreading awareness by sharing this post and ensuring that no family goes without this essential information. 💜 Find out more here: https://bit.ly/3M4uJJY

Every voice brings us closer to meaningful change — and we need yours. Join us for DSF’s Advocacy Webinar on October 22nd to discover how taking action and engaging in advocacy efforts can create meaningful change. By advocating on a personal level, you can help drive significant impact for the Dravet community. 🦋 Daytime session, 1 PM ET: bit.ly/4eKskRh 🦋 Evening session, 8 PM ET: bit.ly/405mOUQ Can’t attend live? No worries—one of the sessions will be recorded and available for you to watch later.

A heartfelt thank you to Jazz Pharmaceuticals and UCB for being our Platinum Sponsors of the 2024 National Steps Toward a Cure! Your unwavering commitment fuels our mission to bring hope, support, and progress to families facing the challenges of Dravet syndrome. With your partnership, we are making a tangible difference in the lives of those impacted by this devastating condition. Together, we’re not just raising awareness—we’re stepping toward a cure! 💜🙌 bit.ly/3zeeNle.

Having a family member with Dravet syndrome can feel overwhelming, but you’re not alone. Join us for a compassionate and supportive Grandparent and Extended Family Virtual Meetup on Monday, October 14th at 3 pm Eastern. Can’t attend this one? Our next meetup is on November 12! These meetups are a great opportunity to connect with others who understand the unique challenges and joys of supporting a grandchild with Dravet. Learn how DSF can help support your family and connect with other extended family members. Click here to register: bit.ly/3zT8owk 💜

⏱ The time to support Dravet families, accelerate research, and advance towards a cure is now! October 10th is DAF Day and you can join the movement by recommending a grant from your Donor-Advised Fund today. DAFs are an increasingly popular way to support DSF — learn more and get started now by clicking here: bit.ly/3U18p8h

Individuals with Dravet syndrome often need constant supervision to ensure their safety due to the unpredictable nature of seizures and other related risks. This is just one of the many daily challenges faced by families in our community. 💜 Help us raise awareness by sharing this fact with your community! The more people know about Dravet syndrome, the closer we get to a future with better treatments and support for those affected. 🦋

At just six months old, Nathan’s first seizure turned a normal day into a life-changing event for his family. Yet, through it all, Nathan continues to be a beacon of joy, greeting his preschool classmates with his signature smile. Thanks to new medications and a specialized diet, Nathan’s seizures have become shorter and less frequent, bringing his family moments of hope and relief. Yet, their journey is marked by moments where quick action and constant vigilance have saved Nathan’s life. Nathan’s story is a reminder of the strength, resilience, and love shown by families affected by Dravet syndrome. Together, let’s continue raising awareness and supporting efforts to find a cure. 💜 bit.ly/4dvtrme

Time is running out! Our limited-edition anniversary t-shirt is available until October 15—don't miss your chance to support the Dravet community in a special way. Each purchase not only raises awareness but also directly funds vital research and supports families affected by Dravet syndrome. Order by October 15, and your t-shirt will arrive in time for Epilepsy Awareness Month this November. Wear it proudly and know you're making a real difference! 💪 🦋 Link in bio to get yours today! bit.ly/3XOxpAS

🌟 Warrior Wednesday Spotlight: Sabrina’s Big Adventure! 🌟 Meet Sabrina and her new wagon! Thanks to the DSF 2024 Patient Assistance Grant program, Sabrina had her very first seizure-free outing on the boardwalk. Her mom, Jaclyn, shared: "Just wanted to show you my little girl Sabrina in her lovely wagon! She absolutely loves it! This is the first time ever she was able to do the boardwalk for an extended period with no issues. Not one seizure. Thank you for making my little warrior the happiest girl." We are proud to support Sabrina and her family through the Patient Assistance Grant program—and it’s all possible thanks to the generosity of our community. Your continued support helps us bring smiles, hope, and unforgettable memories to our little warriors. 💪💜