iiinova — where your digital self keeps evolving

Dravet Syndrome Foundation @curedravet.bsky.social · 29/09/2026

🔬 Tonight at 7 PM ET: What’s happening now in Dravet syndrome research and clinical trials? Join DSF for our next State of the Foundation Town Hall and stay connected to where the field stands today. 🔗 Join tonight’s update ➞ tr.ee/dsf-town-hal... #DravetSyndrome #DravetResearch

000

Dravet Syndrome Foundation @curedravet.bsky.social · 21/09/2026

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.

010

Dravet Syndrome Foundation @curedravet.bsky.social · 18/09/2026

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 ➞ tr.ee/meet-shannon...

110

Dravet Syndrome Foundation @curedravet.bsky.social · 18/09/2026

#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 ➞ tr.ee/meet-our-tea...

000

Dravet Syndrome Foundation @curedravet.bsky.social · 12/09/2026

👟 Steps Toward a Cure turns local action into community impact. 💜 Thank you to Platinum Sponsor Neurelis and Gold Sponsors ucbglobal.bsky.social + Jazz Pharmaceuticals for supporting Steps communities nationwide. 🔗 See how you can help extend that impact ➞ tr.ee/steps-toward...

000

Dravet Syndrome Foundation @curedravet.bsky.social · 11/09/2026

🔬 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 → tr.ee/dsf-town-hal... #DravetSyndrome #ClinicalTrials

010

Dravet Syndrome Foundation @curedravet.bsky.social · 04/09/2026

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 ➞ tr.ee/dravet-resea...

030

Dravet Syndrome Foundation @curedravet.bsky.social · 31/08/2026

Thank you to Jazz Pharmaceuticals and ucbglobal.bsky.social 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

000

Dravet Syndrome Foundation @curedravet.bsky.social · 28/08/2026

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 ➞ tr.ee/DmfPChxv9m #DravetSyndrome

011

Dravet Syndrome Foundation @curedravet.bsky.social · 21/08/2026

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.bsky.social 🧬 Full recap ➞ tr.ee/s2GxfQqfte #DravetSyndrome

000

Dravet Syndrome Foundation @curedravet.bsky.social · 10/08/2026

For DSF, supporting patient families includes practical resources, connection, and moments of joy. 💜 Thank you, @stoketx.bsky.social, our Birthday Buddies Club Sponsor, for helping us celebrate individuals with Dravet syndrome through cards and gifts from Aurora. #DravetSyndrome

000

Dravet Syndrome Foundation @curedravet.bsky.social · 07/08/2026

Genetic therapies for Dravet syndrome do not all work the same way. No genetic therapy is currently approved. 🧬 Explore the updated DSF resource: tr.ee/Bn1k_okGw6 📖 Read the Decoding Dravet blog: tr.ee/f9L_z5r95x #DravetSyndrome #RareDisease #GeneTherapy

000

Dravet Syndrome Foundation @curedravet.bsky.social · 06/08/2026

📣 Great news: The National Plan for Epilepsy Act passed the U.S. Senate! This bipartisan milestone could strengthen epilepsy research and care, including for families affected by Dravet syndrome. Urge your U.S. representative to support it ➞ tr.ee/1SL-lYqbcp #DravetSyndrome

010

Dravet Syndrome Foundation @curedravet.bsky.social · 05/08/2026

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: tr.ee/lSSTmXkAfH 💬 Hear what it’s like to work for DSF: tr.ee/8UM6YeV7sQ

000

Dravet Syndrome Foundation @curedravet.bsky.social · 29/07/2026

DSF continues to hold a Four-Star Charity Navigator 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. 🔗 tr.ee/CharityNav @charitynav.bsky.social

000

Dravet Syndrome Foundation @curedravet.bsky.social · 25/07/2026

#GeneticTesting can be critical to identifying #DravetSyndrome sooner and guiding appropriate care. For families facing unexplained seizures, answers matter—and delays carry consequences. @startgenetic.bsky.social 🔗 Start the conversation ➞ startgenetic.org

010

Dravet Syndrome Foundation @curedravet.bsky.social · 24/07/2026

🧬 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 ➞ tr.ee/gSAWSyMIFU

010

Dravet Syndrome Foundation @curedravet.bsky.social · 23/07/2026

Thank you to @stoketx.bsky.social, 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 ➞ advocatefordravet.org #AdvocateForDravet

110

Dravet Syndrome Foundation @curedravet.bsky.social · 17/07/2026

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

010

Dravet Syndrome Foundation @curedravet.bsky.social · 14/07/2026

Families across our community helped secure proclamations recognizing June 23 as Dravet Syndrome Awareness Day in cities, counties, and states. 🔗 Learn more about the actions we’re asking our community to drive forward ➞ advocatefordravet.org #AdvocateForDravet #DravetSyndrome

010

Dravet Syndrome Foundation @curedravet.bsky.social · 10/07/2026

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

020

Dravet Syndrome Foundation @curedravet.bsky.social · 03/07/2026

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

000

Dravet Syndrome Foundation @curedravet.bsky.social · 01/07/2026

📣 Congratulations to our 2026 #DSFConference Community Award winners: Jim & Rose Brennan, Daniel Chang & Deb Dory Chang, @stoketx.bsky.social & Misty Ried. Their leadership and service are moving the Dravet syndrome community forward. 🔗 Read more ➞ Link in comments!

000

Dravet Syndrome Foundation @curedravet.bsky.social · 30/06/2026

💜 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. 💜

010

Dravet Syndrome Foundation @curedravet.bsky.social · 26/06/2026

Day 2 of #DSFConference covered the full Dravet landscape: non-seizure impacts, adulthood, emergencies/SUDEP, genetics, keto, surgery, cardiac research, clinical trials & genome study. Progress depends on research + family voices. 🔗 Resources ➞ tr.ee/wJurPI3YRd

000

Dravet Syndrome Foundation @curedravet.bsky.social · 26/06/2026

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 💜🦋

000

Dravet Syndrome Foundation @curedravet.bsky.social · 25/06/2026

We are excited to be welcoming our families, medical professionals and industry partners to our 2026 DSF Family & Professional Conference in Orlando! #DSFConference #DSFOrlando2026 #DravetSyndrome #DravetSyndromeAwareness #DravetAwarenessMonth

010

Dravet Syndrome Foundation @curedravet.bsky.social · 23/06/2026

💜 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...

010

Dravet Syndrome Foundation @curedravet.bsky.social · 22/06/2026

🌴💜 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

000

Dravet Syndrome Foundation @curedravet.bsky.social · 18/06/2026

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

000

Dravet Syndrome Foundation @curedravet.bsky.social · 11/06/2026

Earlier this week, DSF leaders and families joined Stoke Therapeutics leadership on Capitol Hill to educate Members of Congress about #DravetSyndrome and advocate for expanded access to genetic testing. We’re proud to support H.R.7118, H.R.6280/S.3607 & H.R.1189/S.494 🗣️

020

Dravet Syndrome Foundation @curedravet.bsky.social · 10/06/2026

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

000

Dravet Syndrome Foundation @curedravet.bsky.social · 09/06/2026

The #Dravet community knows #epilepsy is more than seizures. The National Plan for Epilepsy Act would help create a coordinated federal strategy to prevent, diagnose, treat, and cure the epilepsies while improving lives. ⏰ Ask Congress to support it today ➞ tr.ee/ZL47AzWcX2

021

Dravet Syndrome Foundation @curedravet.bsky.social · 07/06/2026

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

010

Dravet Syndrome Foundation @curedravet.bsky.social · 01/06/2026

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

120

Dravet Syndrome Foundation @curedravet.bsky.social · 30/05/2026

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

010

Dravet Syndrome Foundation @curedravet.bsky.social · 13/05/2026

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

000

Dravet Syndrome Foundation @curedravet.bsky.social · 06/05/2026

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

010

Dravet Syndrome Foundation @curedravet.bsky.social · 06/05/2026

💜 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

010

Dravet Syndrome Foundation @curedravet.bsky.social · 06/05/2026

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

010

Dravet Syndrome Foundation @curedravet.bsky.social · 04/05/2026

📣 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

120

Dravet Syndrome Foundation @curedravet.bsky.social · 29/04/2026

⚽️ 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

000

Dravet Syndrome Foundation @curedravet.bsky.social · 27/04/2026

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

010

Dravet Syndrome Foundation @curedravet.bsky.social · 24/04/2026

🧠 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

010

Dravet Syndrome Foundation @curedravet.bsky.social · 17/04/2026

#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

020

Dravet Syndrome Foundation @curedravet.bsky.social · 14/04/2026

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.

030

Dravet Syndrome Foundation @curedravet.bsky.social · 06/04/2026

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

120

Dravet Syndrome Foundation @curedravet.bsky.social · 02/04/2026

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

030

Dravet Syndrome Foundation @curedravet.bsky.social · 30/03/2026

⏱️ 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

020

Dravet Syndrome Foundation @curedravet.bsky.social · 27/03/2026

🗣️ 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

010