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 ๐ 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
โฐ Next Thursday, March 12 โข 7:00 PM ET (Virtual)
Join DSFโs 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.
๐ Register here: tr.ee/DSF-TownHall
#DravetSyndrome
๐จ Last call โ ONE Team DSF bib left for the 2026 #TCSNYCMarathon (Nov 1) ๐๐
Team DSF is already 5 runners strong โ need this last spot filled ASAP.
Fundraising min: $6,000 by Oct 30.
๐ฉ fundraising@dravetfoundation.org
#DravetSyndrome #DravetCommunity #CharityRunner
Today is #RareDiseaseDay. ~72% of rare diseases are geneticโand #Dravetsyndrome is one of them. ~70% of genetic rare diseases start in childhood. Families deserve faster diagnosis, care & supports built for rare realities.
โฉ Share to widen awareness and urgency @rarediseaseday.bsky.social
DSF earned the highest โญโญโญโญ Four-Star Rating from Charity Navigator (charitynav.bsky.social) โ an independent trust signal reflecting our commitment to transparency, accountability, and responsible stewardship.
๐ tr.ee/CharityNav
#GiveWithConfidence #DravetSyndrome
DSF is on Capitol Hill for #RareDC2026 with 13 Dravet familiesโpart of Rare Disease Week hosted by the EveryLife Foundation for Rare Diseases.
Reply with a ๐ 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.
๐ 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 ๐งฌ ๐ tr.ee/lLXxz_cig3
โ๏ธ Save the Date: State of the Foundation Town Hall
March 12 โข 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 ๐ tr.ee/DSF-TownHall
#DravetSyndromeAwareness
Policy update ๐ FY26 signed Feb 3:
๐งช research funding protected,
๐ฅ better out-of-state Medicaid/CHIP access for pediatric specialty care,
โก 5-year Rare Pediatric Disease PRV renewal.
Your advocacy helps drive change. #AdvocateforDravet ๐https://tr.ee/DSF-Advocacy
Registration is open! ๐ฃ DSF Family & Professional Conference June 25โ27, 2026 โข Orlando, FL
Space is limitedโregister soon! โณ ๐ Sessions: treatment, research & clinical trials + daily care. ๐ค โ
Register now โ tr.ee/DSFConferenc...
Sharing ๐ The 7th Annual Purple Dayยฎ Expoโhosted by The Anita Kaufmann Foundation + @epilepsyfoundation.bsky.social โis March 28, 2026 at Disneyโs Coronado Springs Resort (Orlando/Lake Buena Vista, FL). #Epilepsy education, resources & community connection.
๐ Link in bio โ๐ Links โ tr.ee/8lWzp0USRp
๐จ Tonight 7pm ET
๐ฆ๐งฌ #DravetGenomeStudy webinar (@childrensphila.bsky.social x DSF)
Learn why participation matters + how to take part (live Q&A).
โ
Register โ ๐ฃ Upcoming Virtual Events: tr.ee/h2J-oFA2gC
โฐ Closing tomorrow (Jan 21)! ๐๐
Charles Byrdโs custom #MyCauseMyCleats (2025 season, Size 11)โmade by #SecondLineShoes in honor of his daughter who lives with #DravetSyndromeโare up for auction, benefiting DSF.
โฐ Bid now โ Link in bio โ ๐ Links ๐ tr.ee/zVfVUr_QBt
โณ 1 week away! ๐ฆ๐งฌ #DravetGenomeStudy webinar (@childrensphila.bsky.social x DSF)
Mon Jan 26 โข 7pm ET โ Learn why participation matters + how to take part (live Q&A).
โ
Register โ ๐ฃ Upcoming Webinars: tr.ee/h2J-oFA2gC
๐ง ๐งฌ #EpilepsyAwarenessDay is coming to #WaltDisneyWorld (Orlando) ๐ฐโhosted by Epilepsy Alliance Florida ๐ค๐
Apr 25โ26, 2026๐ Disneyโs Contemporary Resort.๐ Education + ๐งพ exhibitors/resources +๐support for #epilepsy families.
๏ปฟ๐ Details ๐ tr.ee/Z3ANPyNOu8
๐ฆ Registration is open: DSF Family & Professional Conference
๐Jun 25โ27๐ORL, FL Renaissance at SeaWorld
Families + clinicians + researchers + advocatesโlearn, connect, & strengthen support.
โ
Register now โ ๐ Upcoming Events โ tr.ee/5LJIm_IZml
#DSFConference #DravetSyndrome #CureDravet
๐ฆ๐งฌ #DravetGenomeStudy webinar (childrensphila.bsky.social x DSF) โ Mon Jan 26 โข 7pm ET
Join to learn how you can support #SCN1A research by participating in the DSF-funded Dravet Genome Study. Live Q&A.
โ
Register ๏ปฟโ ๐ฃ Upcoming Webinars: tr.ee/h2J-oFA2gC
๐๐ Turn fandom into impact.
Charles Byrdโs custom MCMC (2025 season, Size 11) are up for auction, with proceeds benefiting DSFโsupporting families and fueling progress in Dravet syndrome research.
โณ Jan 18
โฐ Bid here ๐ tr.ee/zVfVUr_QBt
#CureDravet #MyCauseMyCleats
Building momentum in 2026 takes all of us. ๐ฆ
Simply put, fundraising funds us. It sustains critical research and supports families impacted by Dravet syndrome.
๐๐ธStart a fundraiser / host an event ๐
tr.ee/pnFgesuSJi
#DravetSyndrome #DravetCommunity #CureDravet
Over 180 clinicians, researchers & partners joined us for our 16th Annual Research Roundtable.
We also announced DSFโs 2025 Grant Awards โ 8 projects totaling $1.725M to advance science, strengthen clinical tools & support rising researchers.
Learn more: dravetfoundation.org/announcing-d...
๐ Itโs Dravet Syndrome Awareness Day and DSF staff is proud to show up for our community. Share your photo, raise your voice, and help turn awareness into action.
๐ฃ Check out our Awareness Month resources: bit.ly/3q4arIH
#CureDravet
Your support and involvement with DSF are helping to shape a brighter future for individuals and families affected by Dravet syndrome. We invite you to explore our 2024 Annual Report, which highlights the incredible progress we've made together over the past year.
Learn more: bit.ly/3YR1roM
For families navigating Dravet syndrome, finding new treatment options offers hope. The Phase 3 ARGUS Trial is currently enrolling patients with Dravet syndrome to test if Clemizole (EPX-100) can reduce seizure frequency.
Read our blog to learn more: bit.ly/4d0h1Eq
#CureDravet
Phase 3 trials for zorevunersen (STK-001) โ a treatment targeting the genetic cause of Dravet syndrome โ are expected to begin this summer.
Weโve created an in-depth FAQ to help you understand where things stand and whatโs next.
๐ฆ Read the full FAQ blog: bit.ly/41EZtZe
#CureDravet #DravetSyndrome
New DSF-funded study finds impaired cellular energy metabolism in kids with #DravetSyndrome โ adding key insights to how we understand this disease. ๐งฌ Thank you to our donors who make research like this possible! ๐ #EpilepsyResearch #DSFImpact
๐ Read: bit.ly/42h9ZWH
Thank you, Audrey! #advocatefordravet
Legislative changes can have a direct impact on the disabled and rare disease communities, including those affected by #Dravet syndrome. Stay informed and take action.This weekโs Decoding Dravet blog dives into ways to get involved and advocate for change.
Dravet syndrome affects more than seizuresโit impacts cognition, behavior, and overall health. Collaboration among professionals is key to improving outcomes. Letโs share knowledge, innovate, and work toward better treatments. Explore our Roadmap to a Cure: bit.ly/3Z3PICD
#CureDravet #DSF
