Dravet Syndrome Foundation

The mission of DSF is to raise funds for research into Dravet syndrome and related epilepsies, while offering support to patients and families.

[Dravet Syndrome Foundation @curedravet]

Progress in #DravetSyndrome is not the work of one person, organization, or breakthrough. The progress we see today was built by all of you—together.

On #WorldGratitudeDay, Mary Anne Meskis shares a message of gratitude for everyone moving this mission forward.

[Dravet Syndrome Foundation @curedravet]

Celebrating Shannon Cloud as she marks 3 years on staff at DSF 👏🎉 As Alaina’s mom and a longtime advocate, her lived experience guides her work as Patient Advocacy Director.

🔗 Learn what shaped Shannon’s path to advocacy ➞ https://t.co/IROI6SfOVd

[Dravet Syndrome Foundation @curedravet]

#TeamDSF is growing! 💜

Please welcome Paula Aguilera, our new Community Fundraising Coordinator, and Sarah-Jane Ziaya, our new Community Engagement Coordinator.

👋 Meet the newest members of DSF ➞ https://t.co/39u0rWNqGe

[Dravet Syndrome Foundation @curedravet]

👟 Steps Toward a Cure turns local action into community impact.

💜 Thank you to Platinum Sponsor @NeurelisInc and Gold Sponsors @UCBUSA + @JazzPharma for supporting Steps communities nationwide.

🔗 See how you can help extend that impact ➞ https://t.co/0Ru7tApszJ

[Dravet Syndrome Foundation @curedravet]

🔬 Join DSF on Sept. 29 at 7 PM ET for our 2nd State of the Foundation Town Hall.

We’ll share an update focused on current Dravet syndrome research and clinical trials.

🔗 Register to join us → https://t.co/oCMCniuHj6

#DravetSyndrome #ClinicalTrials

[Dravet Syndrome Foundation @curedravet]

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 ➞ https://t.co/7sNu17W958

[Dravet Syndrome Foundation @curedravet]

Thank you to @JazzPharma and @UCBUSA 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

[Dravet Syndrome Foundation @curedravet]

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 ➞ https://t.co/K2dZHKDHRB

#DravetSyndrome

[Dravet Syndrome Foundation @curedravet]

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

🧬 Full recap ➞ https://t.co/bYY5cY8m31

[Dravet Syndrome Foundation @curedravet]

For DSF, supporting patient families includes practical resources, connection, and moments of joy. 💜

Thank you, @StokeTx, our Birthday Buddies Club Sponsor, for helping us celebrate individuals with Dravet syndrome through cards and gifts from Aurora. #DravetSyndrome

[Dravet Syndrome Foundation @curedravet]

Genetic therapies for Dravet syndrome do not all work the same way. No genetic therapy is currently approved.

🧬 Explore the updated DSF resource: https://t.co/pSsaMRNAzf

📖 Read the Decoding Dravet blog: https://t.co/RxCozeHmJV
#DravetSyndrome #RareDisease #GeneTherapy

[Dravet Syndrome Foundation @curedravet]

📣 Great news: The National Plan for Epilepsy Act passed the U.S. Senate! This bipartisan milestone could strengthen epilepsy research + care, including for families affected by Dravet syndrome. Urge your representative to support it ➞ https://t.co/irOAAl0yHX #DravetSyndrome

[Dravet Syndrome Foundation @curedravet]

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: https://t.co/YtCCxzpUPD
💬 Hear what it’s like to work for DSF: https://t.co/M0pXNwgA0m

[Dravet Syndrome Foundation @curedravet]

DSF continues to hold a Four-Star @CharityNav 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.

🔗 https://t.co/n5eXuvb4eN

[Dravet Syndrome Foundation @curedravet]

#GeneticTesting can be critical to identifying #DravetSyndrome sooner and guiding appropriate care. For families facing unexplained seizures, answers matter—and delays carry consequences. @StartGenetic

🔗 Start the conversation ➞ https://t.co/n8Zff6Vp4W

[Dravet Syndrome Foundation @curedravet]

🧬 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 ➞ https://t.co/8qQ5E3zcPv

[Dravet Syndrome Foundation @curedravet]

Thank you to @StokeTx, 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 ➞ https://t.co/ahiVf1K0Hj #AdvocateForDravet

[Dravet Syndrome Foundation @curedravet]

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.

🔗 https://t.co/0DzphfnWZG

[Dravet Syndrome Foundation @curedravet]

Families across our community helped secure proclamations recognizing June 23 as Dravet Syndrome Awareness Day in cities, counties & states.

🔗 Learn more about the actions we’re asking our community to drive forward ➞ https://t.co/ahiVf1K0Hj

#AdvocateForDravet #DravetSyndrome

[Dravet Syndrome Foundation @curedravet]

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 ➞ https://t.co/QAKRNrV8ix
🔗 Adult resources ➞ https://t.co/x6vkYslD8p