#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

13 families joined DSF in D.C. #RareDC2026 hosted by everylifeorg.bsky.social. With Shannon Cloud, Gloria Rodriguez, + Austin Watson, they met with offices across 12 states advocating for research, access, education, + support. Thanks to stoketherapeutics.bsky.social + UCB 🔗 tr.ee/HkUam6SPzp

@stoketherapeutics.bsky.social + Biogen: NEJM published Phase 1/2a + open-label extension follow-up of investigational zorevunersen in Dravet syndrome, reporting durable seizure reductions and broader clinical/functional improvements.

PR: tr.ee/Stoke-dlqoe4 | Paper: tr.ee/s8SmfcLh4k

⏰ Next Thursday, March 12 • 7:00 PM ET (Virtual)

Join DSF’s State of the Foundation Town Hall for DSF progress + 2026 plans, Dravet research & clinical trial updates, and how our community is engaging in patient advocacy.

🔗 Register here: tr.ee/DSF-TownHall

#DravetSyndrome

🚨 Last call — ONE Team DSF bib left for the 2026 #TCSNYCMarathon (Nov 1) 💜🏃

Team DSF is already 5 runners strong — need this last spot filled ASAP.

Fundraising min: $6,000 by Oct 30.

📩 fundraising@dravetfoundation.org

#DravetSyndrome #DravetCommunity #CharityRunner

Today is #RareDiseaseDay. ~72% of rare diseases are genetic—and #Dravetsyndrome is one of them. ~70% of genetic rare diseases start in childhood. Families deserve faster diagnosis, care & supports built for rare realities.
⏩ Share to widen awareness and urgency @rarediseaseday.bsky.social

DSF earned the highest ⭐⭐⭐⭐ Four-Star Rating from Charity Navigator (charitynav.bsky.social) — an independent trust signal reflecting our commitment to transparency, accountability, and responsible stewardship.

👉 tr.ee/CharityNav

#GiveWithConfidence #DravetSyndrome

DSF is on Capitol Hill for #RareDC2026 with 13 Dravet families—part of Rare Disease Week hosted by the EveryLife Foundation for Rare Diseases.

Reply with a 💜 to thank these families. #RareDiseaseWeek #PatientAdvocacy

@cnbc.com Cures Summit is March 3, 2026.

Global leaders will discuss bold solutions to accelerate progress for the rare disease community.

In-person is limited, but free livestream registration is open + replays follow on CNBC.com.

👉 tr.ee/g9orz8G9Z5

New DSF-funded research: integrating natural history data across studies + biomarker discovery to improve prediction tools for SCN1A-related epilepsies, incl. Dravet syndrome. Earlier, more accurate diagnosis starts with better data 🧬 👉 tr.ee/lLXxz_cig3

⚖️ Save the Date: State of the Foundation Town Hall
March 12 • 7:00 PM ET (Virtual)

Join DSF for updates on organizational updates, Dravet research + clinical trials, and how our community is engaging in patient advocacy 👉 tr.ee/DSF-TownHall

#DravetSyndromeAwareness

Policy update 💜 FY26 signed Feb 3:

🧪 research funding protected,
🏥 better out-of-state Medicaid/CHIP access for pediatric specialty care,
⚡ 5-year Rare Pediatric Disease PRV renewal.

Your advocacy helps drive change. #AdvocateforDravet 👉https://tr.ee/DSF-Advocacy

Registration is open! 📣 DSF Family & Professional Conference June 25–27, 2026 • Orlando, FL

Space is limited—register soon! ⏳ 🎓 Sessions: treatment, research & clinical trials + daily care. 🤝 ✅ Register now → tr.ee/DSFConferenc...

Sharing 💜 The 7th Annual Purple Day® Expo—hosted by The Anita Kaufmann Foundation + @epilepsyfoundation.bsky.social —is March 28, 2026 at Disney’s Coronado Springs Resort (Orlando/Lake Buena Vista, FL). #Epilepsy education, resources & community connection.

👉 Link in bio →🔗 Links → tr.ee/8lWzp0USRp

🚨 Tonight 7pm ET
🦋🧬 #DravetGenomeStudy webinar (@childrensphila.bsky.social x DSF)
Learn why participation matters + how to take part (live Q&A).
✅ Register → 📣 Upcoming Virtual Events: tr.ee/h2J-oFA2gC

⏰ Closing tomorrow (Jan 21)! 🏈👟

Charles Byrd’s custom #MyCauseMyCleats (2025 season, Size 11)—made by #SecondLineShoes in honor of his daughter who lives with #DravetSyndrome—are up for auction, benefiting DSF.

⏰ Bid now → Link in bio → 🔗 Links 👉 tr.ee/zVfVUr_QBt

⏳ 1 week away! 🦋🧬 #DravetGenomeStudy webinar (@childrensphila.bsky.social x DSF)

Mon Jan 26 • 7pm ET — Learn why participation matters + how to take part (live Q&A).

✅ Register → 📣 Upcoming Webinars: tr.ee/h2J-oFA2gC

🧠🧬 #EpilepsyAwarenessDay is coming to #WaltDisneyWorld (Orlando) 🏰—hosted by Epilepsy Alliance Florida 🤝📅 Apr 25–26, 2026📍 Disney’s Contemporary Resort.🎓 Education + 🧾 exhibitors/resources +💜support for #epilepsy families.
🔗 Details 👉 tr.ee/Z3ANPyNOu8

🦋 Registration is open: DSF Family & Professional Conference

📆Jun 25–27📍ORL, FL Renaissance at SeaWorld

Families + clinicians + researchers + advocates—learn, connect, & strengthen support.

✅ Register now → 📌 Upcoming Events → tr.ee/5LJIm_IZml

#DSFConference #DravetSyndrome #CureDravet

🦋🧬 #DravetGenomeStudy webinar (childrensphila.bsky.social x DSF) — Mon Jan 26 • 7pm ET

Join to learn how you can support #SCN1A research by participating in the DSF-funded Dravet Genome Study. Live Q&A.

✅ Register → 📣 Upcoming Webinars: tr.ee/h2J-oFA2gC

🏈👟 Turn fandom into impact.

Charles Byrd’s custom MCMC (2025 season, Size 11) are up for auction, with proceeds benefiting DSF—supporting families and fueling progress in Dravet syndrome research.

⏳ Jan 18
⏰ Bid here 👉 tr.ee/zVfVUr_QBt

#CureDravet #MyCauseMyCleats

Building momentum in 2026 takes all of us. 🦋
Simply put, fundraising funds us. It sustains critical research and supports families impacted by Dravet syndrome.

🏁💸Start a fundraiser / host an event 👉
tr.ee/pnFgesuSJi

#DravetSyndrome #DravetCommunity #CureDravet