Dravet Syndrome Foundation

DSF has awarded our largest-ever research grant to researchers at Children's Hospital of Philadelphia (CHOP) to better understand the genetic and clinical features of SCN1A-related disorders. This program is pivotal to understanding the underlying genetic factors that explain why people with SCN1A-related disorders may present differently from one another. This information can inform future clinical trials and offer more precise information to families. The study involves an at-home cheek swab sample for genome sequencing and collection of clinical information from medical records. For more information on participating, email scn1a@chop.edu. Their team is happy to assist with any questions!

We are committed to raising awareness and advocating for adults in the Dravet community. Their journey presents unique challenges and triumphs that merit our full support and understanding. By sharing this #DravetFact, you contribute to a more compassionate and informed professional community. Together, we can enhance the quality of life for Dravet warriors by recognizing their strength and resilience.

Our hearts are full after three incredible days at the 2024 DSF Family & Professional Conference. The sessions on current and new treatments, lifelong care, and navigating adulthood with Dravet syndrome left us inspired and hopeful for the future. From the Wings of Hope Butterfly Release to heartfelt panel discussions, every moment reinforced our commitment to finding better treatments and supporting those living with Dravet syndrome. If you were unable to attend, check out this 2024 DSF Conference Recap blog post written by DSF’s Scientific Director, Dr. Veronica Hood: bit.ly/3xTnO2J. Or purchase a ticket to access recorded sessions through Dec 31, 2024. All recordings will be available for free on our website in January, 2025. 💜

At this year’s conference, we honored five exceptional individuals whose dedication and active participation in our mission are driving advancements and awareness in Dravet syndrome: 🏅Impact & Legacy Award – Dr. Ted Odlaug 🏅Catalyst for Change Award – Laurie Bailey and Dr. Carla Schad 🏅Inspiring Leader Award – Erin Reoyo 🏅Ciara’s Spirit of Hope Award – Heather Johnson Join us in recognizing these passionate individuals for their important contributions as they continue to inspire and drive meaningful change in for our Dravet community. Learn more about their achievements and the impact they are making: bit.ly/46h3uVK

Following Dravet Syndrome Awareness Month, we’d like to highlight the incredible work of neurologists like Dr. Danielle Molinari Andrade. She is making waves in research and care for adults with genetic epilepsies like Dravet syndrome, leading to improved seizure control and quality of life for patients. Her dedication to patient care, teaching, mentoring, and research is truly inspiring. Her work emphasizes the importance of early diagnosis and tailored treatments for Dravet syndrome, which can significantly reduce seizure frequency and enhance long-term developmental outcomes. Her commitment to genetic testing for patients of all ages and precision therapy showcases the advancements in our understanding of this complex condition. Join us in celebrating the efforts of Dr. Andrade, whose passion and expertise are driving forward the fight for better treatments for Dravet syndrome. Read the full article here: bit.ly/4f1RATI

BarbeCURE for Cora was a massive success! On June 9, our first-time hosts raised $31,704.26! The tremendous support and generosity helped us raise awareness and funds. It was heartwarming to see our community unite for such a meaningful cause. Thank you to the incredible hosts and everyone who contributed to making this event a triumph! Together, we are driving change and making a difference. 💜 bit.ly/4eZdYwX

On September 7, experience a night of fun and philanthropy at Jim Ellis VW Lighthouse in Atlanta, Georgia. Enjoy casino games, silent and live auctions, and delicious food, all while supporting the Dravet Syndrome Foundation. Every dollar raised helps us get closer to a cure for Dravet syndrome. Don’t miss out on this exciting opportunity to make a difference! Visit bit.ly/3VL616U to read more about the event and the incredible Warriors you will be supporting. Get your tickets today and be part of this unforgettable evening!

Medication can't always tame the storm of seizures. Help us raise awareness by sharing this fact with your friends and family. Want to do even more? Browse our feed and share more Dravet facts to spread the word! Together, we can educate and make a difference. 💜

On August 24, join us for the 13th annual Double Down for Dravet in Frisco, Texas. It will be a night of fun and fundraising that will include dinner, drinks, raffles, and casino games. The theme this year is “Island Paradise” so join us dressed up in your favorite tropical attire! Every dollar raised helps us get closer to a cure for Dravet syndrome. Don’t miss out on this opportunity to make a difference! Get your tickets today! bit.ly/3XR7hXt

Today, we honor National Bereaved Parents Day, a day to acknowledge and remember the incredible strength and love of parents who have lost a child. We hold space for your grief, your memories, and your enduring bond with your loved ones. Your journey is a testament to the power of love and resilience. We see you, support you, and honor your child's memory today and always. Please feel free to share your stories, memories, or simply a name below, so that we as a community can support and uplift one another. 💜