Dravet Syndrome Foundation
@curedravet.bsky.social
200 followers 60 following 11 posts
The mission of DSF is to raise funds for research into Dravet syndrome and related epilepsies, while offering support to patients and families. https://dravetfoundation.org
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curedravet.bsky.social
💜 It’s 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.

🟣 Check out our Awareness Month resources: bit.ly/3q4arIH

#CureDravet
curedravet.bsky.social
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
curedravet.bsky.social
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
curedravet.bsky.social
Phase 3 trials for zorevunersen (STK-001) — a treatment targeting the genetic cause of Dravet syndrome — are expected to begin this summer.

We’ve created an in-depth FAQ to help you understand where things stand and what’s next.

🦋 Read the full FAQ blog: bit.ly/41EZtZe

#CureDravet #DravetSyndrome
curedravet.bsky.social
New DSF-funded study finds impaired cellular energy metabolism in kids with #DravetSyndrome — adding key insights to how we understand this disease. 🧬 Thank you to our donors who make research like this possible! 💜 #EpilepsyResearch #DSFImpact

📖 Read: bit.ly/42h9ZWH
curedravet.bsky.social
Thank you, Audrey! #advocatefordravet
curedravet.bsky.social
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 week’s Decoding Dravet blog dives into ways to get involved and advocate for change.
Feeling overwhelmed by the rapidly changing policy landscape and its impact on the Dravet syndrome community?  - Dravet Syndrome Foundation
At DSF, we understand that keeping up with the quickly evolving changes happening right now can feel overwhelming as you try to determine what the impacts
dravetfoundation.org
curedravet.bsky.social
Dravet syndrome affects more than seizures—it impacts cognition, behavior, and overall health. Collaboration among professionals is key to improving outcomes. Let’s share knowledge, innovate, and work toward better treatments. Explore our Roadmap to a Cure: bit.ly/3Z3PICD
#CureDravet #DSF
Roadmap to a Cure - Dravet Syndrome Foundation
In order to actively drive research toward our goals, DSF and its advisory boards use the following roadmap to evaluate research proposals and encourage
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curedravet.bsky.social
If you’re thinking of donating for #GivingTuesday, we hope you think of us! Your generosity is fueling life-changing research and supporting Dravet families. 💜

Every donation you make before 12/31 will be matched up to $30K. Make 2x the impact today: bit.ly/3FMA5pX
DSF Annual Campaign - Dravet Syndrome Foundation
Dear Friend,
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curedravet.bsky.social
Explore "Expert Perspectives on Dravet Syndrome Management" with Dr. Scott Perry (@thenotoriouseeg.bsky.social), covering diagnosis, emerging therapies, and care strategies. Gain valuable insights here: bit.ly/4fHiMab #DSF #DravetSyndrome
curedravet.bsky.social
Living with Dravet syndrome means facing unpredictable seizures, developmental delays, and medical challenges. But no family faces this alone. DSF is here to provide resources, community, and hope for a brighter future. 💜 Follow along and join us in making a difference! #DravetCommunity #DSF