@dravetsyndromefoundation Dravet Syndrome Foundation

Dravet Syndrome Foundation posts on Instagram about community, share, february, virtual the most. They currently have [-----] followers and [--] posts still getting attention that total [---] engagements in the last [--] hours.

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Social Influence

Social category influence finance travel destinations

Social topic influence community, share, february, virtual, bio, link, science, hope, rare, monday

Top Social Posts

Top posts by engagements in the last [--] hours

"All of us at DSF extend our sincere thanks to Dr. Joseph Sullivan as he concludes his term on our Board of Directors and continues his service to the Dravet community in a new and exciting way. Dr. Sullivan has also served on DSFs Medical Advisory Board and his clinical insight and steady leadership have made a lasting impact on our work and on families across the country. As he steps into his new role as Vice President of Clinical Development at Encoded Therapeutics Dr. Sullivan brings decades of experience from his time at UCSF where he directed the Pediatric Epilepsy Center of Excellence"
Instagram Link 2025-12-29T21:28Z [----] followers, [--] engagements

""They are one of us." Kim T. is a proud grandparent volunteer and advocate in the Dravet community. Her words remind us why this mission mattersand why we need your support right now. Your year-end gift helps DSF expand support advance research and bring more hope to more families in [----]. The countdown is on. Lets finish strongtogether. 🔗 Give today with the link in our bio. #DravetSyndrome #RareDisease #YearEndGiving #DravetSyndrome #CureDravet #BecauseFamiliesCantWait"
Instagram Link 2025-12-30T19:59Z [----] followers, [--] engagements

"As we close out the year were celebrating what you made possible. 💜 In [----] our community helped fund $3.5M+ in research supported hundreds of families through education and connection advanced critical discoveries through the Dravet Genome Study launched new advocacy efforts and deepened our commitment to equity and access. Every fundraiser every photo and every moment of support helped strengthen the Dravet community and move this work forward. Thank you for being part of this journey. 🫶 🦋 Read our [----] Recap blog with the link in our bio. #CureDravet #ThankYou #DravetCommunity"
Instagram Link 2025-12-31T14:03Z [----] followers, [--] engagements

"🌟 Were back from the American Epilepsy Society (AES) annual meeting and our Chief Scientific Officer Dr. Veronica Hood has shared her reflections in a new blog post From DSFs 16th Annual Research Roundtable to powerful panel discussions collaborative meetings with industry leaders and inspiring moments with familiesthis years AES was full of momentum for the Dravet community. 💜 Veronicas recap covers the key takeaways and what they mean for the future of Dravet syndrome research and care. 📖 Read the full blog now with the link in our bio. #DravetSyndrome #AES2025 #DSFCommunity #Epilepsy"
Instagram Link 2025-12-12T22:35Z [----] followers, [--] engagements

"🎉 Celebrating [--] years of impact with Misty Ried 💜 When Mistys son Braxton was diagnosed with Dravet syndrome in [----] she didnt just seek supportshe became a driving force for change. By [----] after raising more than $100000 through community events she officially joined DSF as our Campaign Director. Since then Misty has empowered families and individuals across the Dravet community to launch their own fundraising effortsincluding Steps Toward a Cure walks in communities across the USraising millions to support patient assistance and research. Join us in celebrating Mistys [--] incredible years"
Instagram Link 2025-12-15T21:10Z [----] followers, [--] engagements

"🎉 The countdown is on Atlanta 🎉 Battle for a Breakthrough: A Game Show Night for Dravet is coming to Atlanta on March [--] [----] with a whole new twist Back for its second year this exciting night brings together fun community and purpose as local families bring the energy and raise funds for critical Dravet syndrome research. 🎟 Tickets & Sponsorship info is linked in our bio #CureDravet #DravetSyndrome"
Instagram Link 2025-12-16T20:32Z [----] followers, [--] engagements

"Your story matters and we want to hear it. 💜 On this #WarriorWednesday we honor caregivers as the fierce and resilient warriors they are. If you're caring for someone with Dravet syndrome your journey is powerful and your voice can inspire support and uplift others walking a similar path. 📣 Check out our inspiring Caregiver Stories webpage with the link in our bio and submit your story if youd like to be included. #DravetSyndrome #CaregiverStories #DSFCommunity #DravetWarrior"
Instagram Link 2025-12-17T17:22Z [----] followers, [--] engagements

"📅 Mark your calendars The [----] DSF Family and Professional Conference is headed to Orlando Floridaand we hope your family will be part of this unforgettable experience. This unique event brings together patient families clinicians researchers and industry partners to learn connect and support one another over three powerful days of education collaboration and community. ✨ Stay tuned More details on registration will be available in January 🔗 Link in bio. #DSFConference #DravetCommunity #CureDravet"
Instagram Link 2025-12-18T20:42Z [----] followers, [--] engagements

"As [----] comes to a close were reflecting on a year of impact made possible by the unwavering commitment of our community. 💬 With your partnership and support we are witnessing advances in the field of Dravet syndrome that would have seemed unimaginable when my son was diagnosed [--] years ago. we are not only moving faster but moving forward together. Mary Anne Meskis DSF Chief Executive Officer From awarding $3.5M in research grants to expanding advocacy and equity initiatives every milestone was powered by a united community. 📖 Read Mary Annes powerful year-end reflection with the link in"
Instagram Link 2025-12-19T18:34Z [----] followers, [--] engagements

"💬 Lets talk check in and connect. Join us on Monday December 29th for our final Chat & Connect sessions of the year Whether youre looking to share listen or just feel a little less alone were here for you. These casual virtual meetups are a space for Dravet parents and caregivers to come together and support one another no pressure just community. 💜 🦋 Register for the daytime session or evening Session with the link in our bio. #DravetCommunity #ChatAndConnect #CureDravet #DravetSyndrome"
Instagram Link 2025-12-22T21:04Z [----] followers, [--] engagements

"Happy holidays to our incredible community. Your support this year has meant the world bringing strength hope and real progress to families facing Dravet syndrome. Were so thankful for every step youve taken with us. Wishing you comfort joy and time with the people who matter most. 💜 #CureDravet #DravetCommunity #DravetSyndrome"
Instagram Link 2025-12-24T13:44Z [----] followers, [--] engagements

"Dedes grandson was only [--] years old when he was diagnosed with Dravet syndrome. What came next was overwhelminguntil her family found DSF. Dede calls DSF an essential lifelinea source of knowledge connection and renewed hope. Today shes one of many voices sharing their journey to help other families feel less alone. In [----] DSF delivered over [---] Newly Diagnosed Patient Kits ensuring families dont just get a diagnosisthey get support. 🟣 About [---] children are born in the U.S. with Dravet each year. Were proud to be there for so manybut we want to reach them all. 💜 Your gift makes this"
Instagram Link 2025-12-27T01:35Z [----] followers, [--] engagements

"Meet Kaylee a nine year old who lives a full life despite the many challenges #Dravet throws her way. #Epilepsy #EpilepsyWarrior #DravetWarrior #Dravetsyndrome #Dravetsyndromeawareness"
Instagram Link 2019-07-24T16:21Z [----] followers, [--] engagements

"Today kicks off Epilepsy Awareness Month and we are excited to start it by sharing Jacksons Song with our community Jacksons Song was written and recorded by Nashville Artist Sami Lin in honor of Jackson Aaron and his family and their day to day struggles of living with Dravet syndrome. Jackson had his first seizure at [--] months old lasting more than [--] minutes. Three weeks later he had his second seizure which lasted [--] minutes. This started the Aaron family on their path to get Jackson properly diagnosed and treated a path that took nearly [--] years before he was diagnosed with Dravet"
Instagram Link 2019-11-01T16:00Z [----] followers, [--] engagements

"We've been busy here at DSF. Help us keep the momentum into [----] by supporting our annual campaign. Visit dsfannualcampaign.org or donate on our stories today"
Instagram Link 2019-12-19T15:48Z [----] followers, [---] engagements

"Not Today Dravet 17/30 The complications of living with Dravet syndrome can mean missing out. But every once in a while we get to say #NOTTODAYDRAVET June is #DravetSyndromeAwarenessMonth. Share to show the resilience of our warriors who fight every day"
Instagram Link 2019-06-22T12:21Z [----] followers, [--] engagements

"Share and be aware - Dravet syndrome is catastrophic and needs an urgent cure today Learn more or make a donation: Link in bio. #dravet #dravetsyndrome #dravetsyndromeawareness #epilepsy #specialneeds #dravetsyndromeawarenessmonth #dravetsyndromeawarenessday #seizures #curedravet #specialneedsparenting #research #cure #hopethroughresearch #hope"
Instagram Link 2019-06-23T19:10Z [----] followers, [--] engagements

"Not Today Dravet 18/30 The complications of living with Dravet syndrome can mean missing out. But every once in a while we get to say #NOTTODAYDRAVET June is #DravetSyndromeAwarenessMonth. Share to show the resilience of our warriors who fight every day #dravetsyndrome #dravetawareness #dravetsyndromeawareness #seizures #epilepsy #research #hope #science"
Instagram Link 2019-06-24T16:47Z [----] followers, [--] engagements

"The complications of living with Dravet syndrome can mean missing out. But every once in a while we get to say #NOTTODAYDRAVET June is #DravetSyndromeAwarenessMonth. Share to show the resilience of our warriors who fight every day #dravetsyndrome #dravetawareness #dravetsyndromeawareness #seizures #epilepsy #research #hope #science"
Instagram Link 2019-06-25T16:08Z [----] followers, [--] engagements

"The complications of living with Dravet syndrome can mean missing out. But every once in a while we get to say #NOTTODAYDRAVET June is #DravetSyndromeAwarenessMonth. Share to show the resilience of our warriors who fight every day"
Instagram Link 2019-06-29T14:39Z [----] followers, [--] engagements

"Today is the final day of Dravet Syndrome Awareness Month and we have enjoyed celebrating the best days of our warriors all month with these #NotTodayDravet videos. You can view all of them on our IGTV channel. Join us as we continue to be aware every day. Dravet syndrome is a lifelong condition that impacts every aspect of the patient and their families lives. Even these good days are filled with silent challenges that many families power through to provide the best possible experiences for their loved one. DSF's mission is to aggressively fund research raise awareness and support families."
Instagram Link 2019-06-30T11:34Z [----] followers, [--] engagements

"This #WarriorWednesday meet Kinsley from Indiana Kinsley had her first seizure at [--] months old. There were many ambulance rides hospital stays wonders of when she'd come out of her seizures or when the next one would hit and why. She was diagnosed with Dravet syndrome at [--] months old. It took opinions from three neurologists to get this diagnosis. Kinsley enjoys camping swimming and playing outside especially on swings and slid es She is a very active and fun child and love spending time with her parents and [--] year old brother. Kinsley's mother Danielle shares: "My hope for our daughter is"
Instagram Link 2019-07-04T00:55Z [----] followers, [--] engagements

"☕💜 Give Up Your Cup opens March [--] This March DSF invites you to turn one small daily habit into meaningful impact for families living with Dravet syndrome. Starting March [--] choose a cup to give upcoffee tea soda energy drinks smoothies whatever your go-to isfor a day a week a month or anywhere in between. Then donate what you would have spent to help fund critical Dravet research and family support. Fundraising fuels our mission. And your participation helps move this work forward. ✅ Registration is free ✅ Create your personal fundraising page today ✅ Share with friends family and coworkers"
Instagram Link 2026-02-16T16:30Z [----] followers, [---] engagements

"💜 Sharing for our community: The 7th Annual Purple Day Expohosted by The Anita Kaufmann Foundation + the Epilepsy Foundationis March [--] [----] at Disneys Coronado Springs Resort (Walt Disney World) in Orlando/Lake Buena Vista FL. Epilepsy education + resources + community connectionunder one roof. 👉 Link in bio 🔗 Links #PurpleDay #EpilepsyAwareness #DravetSyndrome #DravetCommunity #CureDravet@epilepsyfdn @purpledayeveryday"
Instagram Link 2026-01-28T17:36Z [----] followers, [--] engagements

"Connection can start with something as simple as one post. 💜 In our latest Decoding Dravet blog parent advocate and digital creator Christina (@bseizurefree) shares how social media became a powerful tool for Dravet syndrome awarenesshelping her go from feeling isolated to finding community educating others with Dravet facts and showing what day-to-day life can look like for families navigating medical complexity. She also shares an important reminder: advocacy doesnt have to come at the cost of privacy. Each family gets to decide what feels rightwhat to share what to protect and how to show"
Instagram Link 2026-01-30T18:19Z [----] followers, [--] engagements

"February Events 📣 This months DSF events include two virtual opportunities to connect share whats helped and feel supported in communityplus Rare Disease Week on This months DSF events include two virtual opportunities to connect share whats helped and feel supported in communityplus Rare Disease Week on Capitol Hill. Mon Feb [--] Grandparent & Extended Family Virtual Meetup A supportive space for grandparents and extended family to connect learn and feel less alone. Mon Feb [--] Chat & Connect Sessions (Caregiver Meetups) Daytime + Evening Sessions Feb [----] Team DSF Participates in Rare Disease"
Instagram Link 2026-02-02T17:00Z [----] followers, [--] engagements

"Caregiver voices matterbecause they help the world understand what Dravet syndrome really looks like. Erikas feature on Patient Worthy (Jan [--] 2026) shares her son Rykers journey and the realities of caregiving: the uncertainty the sacrifices and the strength families build day by dayalongside her familys Choose Joy mantra. Read the full story 👉 Link in bio 🔗 Links #DSFCaregiverStory #DravetSyndrome #DravetSyndromeAwareness #DravetCommunity #CureDravet@patientworthy"
Instagram Link 2026-02-03T17:00Z [----] followers, [--] engagements

"📣 Registration is open for the DSF Family & Professional Conference June [----] [----] in Orlando FL. This is one of the few times our community gathers in one placefamilies caregivers clinicians and researchersto learn connect and leave with practical support. 🤝 ⚠ Space is limited and registration will close once capacity is reached. If youre hoping to join us we encourage you to register as soon as you can. 🎓 Expect education across treatment research clinical trials and day-to-day careplus family supports and meaningful community moments throughout the weekend. A limited number of"
Instagram Link 2026-02-04T17:11Z [----] followers, [--] engagements

"💜 You show up for everyonethis is a space to show up for you. Grandparents and extended family often carry so much: the worry the how can I help the behind-the-scenes support. DSFs Grandparent & Extended Family Virtual Meetups are a place to connect with others who understandand leave with a little more support perspective and steadiness. 🗓 Monday February [--] (held every 2nd Monday of the month) [--] PM PT / [--] PM MT / [--] PM CT / [--] PM ET ✅ Register to receive the Zoom link 👉 Link in bio 📣 Upcoming Virtual Events #DravetSyndrome #DravetCommunity #CureDravet #FamilySupport"
Instagram Link 2026-02-05T05:00Z [----] followers, [--] engagements

"Photo by Dravet Syndrome Foundation on February [--] [----]. May be an image of poster and text that says 'Held the second Monday of every month 5-6 PM PT 6-7 PM MT 7-8 PM CT 8-9 PM ET These virtual meetings are for grandparents or any extended family who would like to connect with others who understand what it is like to have a loved one with Dravet. You will learn about how DSF is here to support family and have the opportunity to engage with other extended family members You must register to receive the Zoom link Dravet Syndrome Foundation'. Photo by Dravet Syndrome Foundation on February 04"
Instagram Link 2026-02-05T05:00Z [----] followers, [--] engagements

"Photo by Dravet Syndrome Foundation on February [--] [----]. May be an image of text that says 'Grandparent and Extended Family Virtual Meetups Connection changes everything. Register today for 2/9 Held every second Monday of the month DravetSyndrome Dravet Syndrome Foundation dravetfoundation.org'. Photo by Dravet Syndrome Foundation on February [--] [----]. May be an image of text that says 'Grandparent and Extended Family Virtual Meetups Connection changes everything. Register today for 2/9 Held every second Monday of the month DravetSyndrome Dravet Syndrome Foundation dravetfoundation.org'. Photo"
Instagram Link 2026-02-05T05:00Z [----] followers, [--] engagements

"Big advocacy news for our community 💜 On February [--] [----] Congress passed and the President signed a FY26 spending packageand it includes important wins for families impacted by rare epilepsies: 🧪 Continued Research Funding: Steady CDC Epilepsy Program funding increased NIH/BRAIN Initiative funding and restored CDMRP investments including epilepsy-focused research support. 🏥 Accelerating Kids Access to Care Act: This will streamline screening and enrollment for pediatric providers in out-of-state Medicaid programs so children can access specialty care across state lines more easily. ⚡ Give"
Instagram Link 2026-02-06T18:33Z [----] followers, [--] engagements

"📚 DSF Caregiver Community Book Club If youre a parent looking for another way to connect its not too late to join. 💜 Now reading (FebMar): How to Handle More Than You Can Handle A therapist + parents guide to navigating the emotional experience of raising a child with high-support needs. 🗓 Live Zoom discussion late March (we read each book over two months then meet toward the end of month two) The [----] picks are here join one or join them all: 📖 AprMay: Year of the Tiger: An Activists Life 📖 JunJul: Finding the Words 📖 AugSep: The Revised Fundamentals of Caregiving 📖 OctNov: The Light"
Instagram Link 2026-02-07T21:00Z [----] followers, [--] engagements

"⚡ When a seizure happens every second matters. A Seizure Action Plan helps families schools and caregivers respond with clarity and confidence. During Seizure Action Plan Awareness Week (Feb [---] 2026) were coming together as a community to make sure more children are protected and supportedat home at school and everywhere in between. 💜 ✅ Start or update your Seizure Action Plan 👉 Link in bio 🔗 Links #SAPAW2026 #SeizureActionPlan #EpilepsyAwareness #DravetSyndromeAwareness #DravetSyndrome #DravetCommunity #CureDravet"
Instagram Link 2026-02-09T16:01Z [----] followers, [---] engagements

"💜 Make sure your voice is heard. It matters. Families caring for loved ones with rare seizure disorders often face harmful or disruptive behaviors that impact daily life. Our community survey is uncovering just how common and challenging these behaviors are. ✅ Already over [---] caregivers have taken the survey. Their responses show: A strong majority want better tools to communicate with healthcare providers 40% say these behaviors are getting worse 53% have seen physical aggression 🌟 Now its your turn. Take the confidential 20-minute survey today. Your voice can guide resources improve"
Instagram Link 2026-02-10T16:00Z [----] followers, [--] engagements

"Caregiver Story Spotlight: Dravet dad Adel Bounif 💜 Behind every child with Dravet syndrome is a caregiver learning to be fearless while feeling afraid. 💜 In his caregiver story Adel Bounif shares how poetry became his way throughthrough hospital days uncertainty and the emotional weight of caring for his daughter. He writes to cope. He writes to raise awareness. He writes so families like his feel less alone. If youre a caregiver you already know: this journey asks everything of you. And still you keep going. We see you. We honor you. Were with you. 💜Read Adels full story and share your"
Instagram Link 2026-02-11T17:50Z [----] followers, [--] engagements

"The complications of living with Dravet syndrome can mean missing out. But every once in a while we get to say #NOTTODAYDRAVET June is #DravetSyndromeAwarenessMonth. Share to show the resilience of our warriors who fight every day"
Instagram Link 2019-06-29T14:39Z [----] followers, [--] engagements

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