Dravet Syndrome Foundation
@curedravet
The mission of DSF is to raise funds for research into Dravet syndrome and related epilepsies, while offering support to patients and families.
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
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 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. 💜
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 💜🦋
💜 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
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
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
New @medscape.org.bsky.social on genetic testing for Dravet syndrome. This module focuses on identifying patients for testing, interpreting results + communicating with caregivers. Developed by Anup Patel, MD, through a DSF + Medscape Education collab. 🔗 tr.ee/dyhwzhZ4dJ @medscape.com.bsky.social
DSF is excited about the launch of @americanbrainco.bsky.social’s new Community Engagement Platform! This space is designed to help us connect, collaborate, and strengthen advocacy and research engagement across the brain health community. 🔗 Learn more ➞ tr.ee/ABC-Care
💜 Today we’re celebrating Gloria Rodriguez’s 2-year workaversary with #TeamDSF! As DSF Health Equity Coordinator, Gloria brings lived experience as a Dravet syndrome parent, advocate, fundraiser, volunteer, and community leader. Thank you, Gloria! 🎉 🧘https://tr.ee/H_EGrTVoTK
Today we’re celebrating Sarah's first workaversary with #TeamDSF! 💜 Sarah joined DSF staff in 2025, but her connection to the organization began years earlier as a supporter. Sarah, thank you for all you do. We’re grateful to have you on Team DSF! 🎨 tr.ee/hpEkmmLvn1
📣 Please join us in welcoming Roberto Ogelman, PhD, to Team DSF as our new Scientific Programs Manager! 💜 Roberto is a neuroscientist and science communicator who will help bring clear, accessible science to the Dravet community. 🏔️ Learn about Berto: tr.ee/yKB-BPgje8
⚽️ Bid now on 4 tickets to Belgium vs. Egypt at the 2026 #FIFAWorldCup™ on June 15 in Seattle! Donated by Bill Kirshner, in honor of his granddaughter, Zoe. This package includes 4 seats: Block 145, Row A, Seats 5–8. ⏰ Auction closes midnight May 29 ➞ tr.ee/FIFA26DSF
Why was DSF founded, and what impact is that work having today? In Episode 66 of the americanbrainco.bsky.social's podcast, Katie Sale talks with Mary Anne Meskis and Shannon Cloud about the origins of DSF, its advocacy work, and support for families. 🎧 tr.ee/ABCEpisode66
🧠 Meet Izzy: our latest blog highlights her proposed project exploring how behavior-analytic caregiver training could better support children with Dravet syndrome and their families, with a focus on an area of need that reaches beyond seizures alone. 🔗 tr.ee/AhZ05I4oTE
#Dravetsyndrome doesn’t only affect the person diagnosed. It also deeply impacts #caregivers and families. DSF was proud to contribute to @ucbglobal.bsky.social's new publication on caregiver #mentalhealth in Dravet syndrome 🔗 Read the study: tr.ee/gImuyzfaFG
Our CEO, Mary Anne Meskis, was honored to join fellow #rareepilepsy advocacy leaders for a meeting hosted by Dr. Dennis Lal with leaders from UT Arlington and Cook Children’s Hospital, including Dr. M. Scott Perry, focused on challenges facing families affected by #DEEs.
Today we’re celebrating Mary Anne Meskis for 14 years on staff at DSF 💜 A founding member in 2009, she joined staff in 2012 and now serves as CEO. Her connection to this mission began as Elliot’s mom. 🔗 Learn more about Mary Anne Meskis: tr.ee/SQalK8yb5e
DSF is one of 150 #epilepsy organizations behind the bipartisan #NationalPlan4Epilepsy Act (S. 494 / H.R. 1189). Take 5 minutes to contact your members of #Congress + ask them to sign on. Your voice matters. 🗣️ Take action → tr.ee/6S079tmRv2 💡 Learn more → tr.ee/EvThhtYM2z
⏱️ For families living with #Dravetsyndrome, progress does not always feel fast. But the bigger picture shows real momentum. Our latest #DecodingDravet blog looks at how far the field has come — and why that progress can feel harder to recognize in real time. 🔗 tr.ee/ikn1FEOhpf
🗣️ DSF was honored to participate in the Disability Policy Seminar in Washington, D.C. this week hosted by thearcus.bsky.social. For families living w/ #Dravetsyndrome, Medicaid, education + disability funding are issues affecting care, support + daily life. 🔗 Advocate with us → advocatefordravet.org
🎥 Town Hall replay is now on demand! If you missed it, you can watch on your time for updates on DSF progress, 2026 plans, #Dravetsyndrome research, current #clinicaltrials + how our community is engaging in patient advocacy, and ways to stay involved. ▶️ tr.ee/jwbaTGNk7f
For 10 years in a row, DSF has earned @candiddotorg.bsky.social's Platinum Seal of Transparency, reflecting our commitment to accountability + responsible stewardship. When we fund research, support families + expand access to resources with deep care for the community we serve. 🔗 tr.ee/Xs7_xeidew
⏰ Tonight at 7:00 PM ET: DSF’s State of the Foundation Town Hall. Join us for DSF organizational updates, #Dravetsyndrome research + current clinical trials, how our community is engaging in advocacy, and ways to stay involved. ✅ Register tr.ee/DSF-TownHall