Dravet syndrome research is moving quickly. The new Research and Clinical Trial Updates group in the DSF Family Network gives families and caregivers one place to follow clinical trials, treatments, and emerging research. 🔗 Explore the new resource ➞ tr.ee/dravet-resea...

Thank you to Jazz Pharmaceuticals and ucbglobal.bsky.social for sponsoring the DSF Family Network Ambassador Program and helping empower Dravet parents who volunteer their time and lived experience to support other families in the community. 💜 #DSFAmbassador

Could a new rabbit model help uncover clues about #SUDEP in Dravet syndrome? DSF Chief Scientific Officer Veronica Robbins-Hood, PhD, explains what researchers are learning. 🔬 Explore what this model could reveal ➞ tr.ee/DmfPChxv9m #DravetSyndrome

Nine states. 25+ congressional offices. 💜 Dravet parents made their voices heard during #RareAcrossAmerica2026, advocating for #epilepsy policy, #research, #Medicaid, #genetic services & treatment access. Thank you everylifeorg.bsky.social 🧬 Full recap ➞ tr.ee/s2GxfQqfte #DravetSyndrome

For DSF, supporting patient families includes practical resources, connection, and moments of joy. 💜 Thank you, @stoketx.bsky.social, our Birthday Buddies Club Sponsor, for helping us celebrate individuals with Dravet syndrome through cards and gifts from Aurora. #DravetSyndrome

Genetic therapies for Dravet syndrome do not all work the same way. No genetic therapy is currently approved. 🧬 Explore the updated DSF resource: tr.ee/Bn1k_okGw6 📖 Read the Decoding Dravet blog: tr.ee/f9L_z5r95x #DravetSyndrome #RareDisease #GeneTherapy

📣 Great news: The National Plan for Epilepsy Act passed the U.S. Senate! This bipartisan milestone could strengthen epilepsy research and care, including for families affected by Dravet syndrome. Urge your U.S. representative to support it ➞ tr.ee/1SL-lYqbcp #DravetSyndrome

A job description tells you what you’ll do. Our team can tell you why it matters. DSF is #nowhiring for 2 remote roles. Applications close Aug 31. 🔎 Explore career opportunities: tr.ee/lSSTmXkAfH 💬 Hear what it’s like to work for DSF: tr.ee/8UM6YeV7sQ

DSF continues to hold a Four-Star Charity Navigator rating—the highest possible—with a score of 94%. ⭐⭐⭐⭐ It reflects our commitment to transparency, responsible stewardship and impact for everyone connected to our mission. 🔗 tr.ee/CharityNav @charitynav.bsky.social

#GeneticTesting can be critical to identifying #DravetSyndrome sooner and guiding appropriate care. For families facing unexplained seizures, answers matter—and delays carry consequences. @startgenetic.bsky.social 🔗 Start the conversation ➞ startgenetic.org

🧬 What if there was a faster pathway for developing gene editing therapies for rare epilepsy? An ARPA-H award of up to $34.5M will support a gene editing platform beginning with Dravet syndrome and AHC. 🔗 Veronica Robbins-Hood, PhD, explains more ➞ tr.ee/gSAWSyMIFU

Thank you to @stoketx.bsky.social, Visionary Sponsor of our Legislative Advocacy Program. Support from Stoke enables DSF to empower families to advocate, engage lawmakers, and elevate Dravet community priorities. 🗣️ Take action ➞ advocatefordravet.org #AdvocateForDravet

Meet Roberto Ogelman, PhD, Scientific Programs Manager at DSF. In our latest Decoding Dravet blog, he shares how caregiving, neuroscience, and science communication led him to the Dravet syndrome community—and what he hopes to contribute. 🔗 tr.ee/yuG0FKsVra

Families across our community helped secure proclamations recognizing June 23 as Dravet Syndrome Awareness Day in cities, counties, and states. 🔗 Learn more about the actions we’re asking our community to drive forward ➞ advocatefordravet.org #AdvocateForDravet #DravetSyndrome

For families approaching or navigating adulthood with Dravet syndrome, transition can bring serious gaps in care. Dr. Irfan Sheikh shares why coordinated adult care matters. 📖 Learn more ➞ tr.ee/JjKEvQOd0T 🔗 Adult resources ➞ tr.ee/DSAdults

What does progress in Dravet syndrome look like up close? DSF Scientific Programs Manager Roberto Ogelman, PhD reflects on his first DSF Conference — sharing research updates, caregiver stories, clinical insights, and community connection. 🔗 Read the full conference recap ➞ tr.ee/sFWcQpakih

📣 Congratulations to our 2026 #DSFConference Community Award winners: Jim & Rose Brennan, Daniel Chang & Deb Dory Chang, @stoketx.bsky.social & Misty Ried. Their leadership and service are moving the Dravet syndrome community forward. 🔗 Read more ➞ Link in comments!

💜 Congratulations to Christina Osenbach, the 2026 recipient of Ciara’s #SpiritOfHopeAward. Presented in memory of Ciara O’Driscoll, daughter of DSF Founder Lori O’Driscoll, this award honors those who go above and beyond for the #Dravetcommunity. 💜

Day 2 of #DSFConference covered the full Dravet landscape: non-seizure impacts, adulthood, emergencies/SUDEP, genetics, keto, surgery, cardiac research, clinical trials & genome study. Progress depends on research + family voices. 🔗 Resources ➞ tr.ee/wJurPI3YRd

Some people help raise funds. Others help build a movement. For nearly a decade, Misty Ried has done both. Congratulations to Misty, DSF Campaign Director, on receiving DSF’s Butterfly Effect Award. Her legacy of heart, purpose, and progress will continue to ripple forward 💜🦋

We are excited to be welcoming our families, medical professionals and industry partners to our 2026 DSF Family & Professional Conference in Orlando! #DSFConference #DSFOrlando2026 #DravetSyndrome #DravetSyndromeAwareness #DravetAwarenessMonth

💜 Happy International Dravet Syndrome Awareness Day. All month long, you’ve shown up — wearing purple, sharing stories, lighting landmarks, and reminding the world that Dravet syndrome demands attention, action, and answers. 🦋 Learn more ➞ dravetfoundation.org/events/aware...

🌴💜 DSF Conference is almost here! Thank you to @ucbglobal.bsky.social, Neurelis, Stoke Therapeutics, Biocodex, Harmony Biosciences, Jazz Pharmaceuticals, Encoded Therapeutics, Ionis, Lundbeck, Praxis & The MacGregor Family. Virtual reg closes Wed 6/24: live + recordings to 12/31. dsfconference.org

Thank you to ucbglobal.bsky.social, our Presenting Sponsor of the 2026 DSF Family & Professional Conference! 🌴💜 Their generous support helps make this meaningful gathering possible for the Dravet community. 🔗 Virtual registration is open until 6/24 with live + on-demand access ➞ dsfconference.org

Earlier this week, DSF leaders and families joined Stoke Therapeutics leadership on Capitol Hill to educate Members of Congress about #DravetSyndrome and advocate for expanded access to genetic testing. We’re proud to support H.R.7118, H.R.6280/S.3607 & H.R.1189/S.494 🗣️

DSF was excited to be at the NIH this week for #CuringtheEpilepsies2026: New Horizons, bringing researchers, clinicians, and advocates together to advance #epilepsyresearch and cures! 🔗 Learn more ➞ 🏛️ tr.ee/hNXmkg9HZ5 ℹ️ tr.ee/cm41fXLUDY

The #Dravet community knows #epilepsy is more than seizures. The National Plan for Epilepsy Act would help create a coordinated federal strategy to prevent, diagnose, treat, and cure the epilepsies while improving lives. ⏰ Ask Congress to support it today ➞ tr.ee/ZL47AzWcX2

Thank you to our 2026 DSF Conference Platinum Sponsors! 🌴💜 💎 Neurelis, Inc. & Stoke Therapeutics Their support helps bring the Dravet community together for education, connection, research updates + collab. Register by 6/17 for in-person or 6/24 for virtual ➞ dsfconference.org

Today we recognize Veronica Robbins-Hood, PhD, Chief Scientific Officer, for 6 incredible years of impact at DSF. 💜 👏 Her scientific expertise and personal understanding of the caregiver experience continue to shape her dedication to Dravet-focused research. 🔗 tr.ee/loj5BYRdRA

Thank you to our 2026 DSF Family & Professional Conference Gold & Silver Sponsors! 🌴💜 🏅 Biocodex, Harmony Biosciences, Jazz Pharmaceuticals 🥈 Encoded Therapeutics, Lundbeck, Ionis +400 are joining us! Virtual option is available with live + on-demand access. Register by 6/17 ➞ dsfconference.org