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
November 25, 2024 at 4:19 PM
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
Hope for families living with #DravetSyndrome
💜
Researchers have received support from @curedravet.bsky.social and Marlins for Mason to test a potential new gene therapy that would directly target impacted brain cells.
More: dravetfoundation.org/2024-dsf-gra...
🧠📈
💜
Researchers have received support from @curedravet.bsky.social and Marlins for Mason to test a potential new gene therapy that would directly target impacted brain cells.
More: dravetfoundation.org/2024-dsf-gra...
🧠📈
December 6, 2024 at 7:40 PM
Hope for families living with #DravetSyndrome
💜
Researchers have received support from @curedravet.bsky.social and Marlins for Mason to test a potential new gene therapy that would directly target impacted brain cells.
More: dravetfoundation.org/2024-dsf-gra...
🧠📈
💜
Researchers have received support from @curedravet.bsky.social and Marlins for Mason to test a potential new gene therapy that would directly target impacted brain cells.
More: dravetfoundation.org/2024-dsf-gra...
🧠📈
New hope for families battling Dravet Syndrome.
Scientists have developed a new gene replacement therapy that could improve treatments for a rare and life-altering form of epilepsy. 🧵
#Neuroskyence #DravetSyndrome
Scientists have developed a new gene replacement therapy that could improve treatments for a rare and life-altering form of epilepsy. 🧵
#Neuroskyence #DravetSyndrome
March 19, 2025 at 6:33 PM
New hope for families battling Dravet Syndrome.
Scientists have developed a new gene replacement therapy that could improve treatments for a rare and life-altering form of epilepsy. 🧵
#Neuroskyence #DravetSyndrome
Scientists have developed a new gene replacement therapy that could improve treatments for a rare and life-altering form of epilepsy. 🧵
#Neuroskyence #DravetSyndrome
Today we presented our SCN1A-mCitrine mouse to help to study the bio distribution of #Nav1.1 #NeuroFrance2025. This will help to understand #DravetSyndrome #Montpellier if you are interested to use it just contact us
May 14, 2025 at 4:01 PM
Today we presented our SCN1A-mCitrine mouse to help to study the bio distribution of #Nav1.1 #NeuroFrance2025. This will help to understand #DravetSyndrome #Montpellier if you are interested to use it just contact us
Welcome to Bluesky 🦋 @lignanilab.bsky.social 🤩 I have added you to the rare genetic epilepsies starter pack 🧠🧬
#DravetSyndrome #GeneTherapy #CRISPR
#DravetSyndrome #GeneTherapy #CRISPR
January 18, 2025 at 10:26 PM
Welcome to Bluesky 🦋 @lignanilab.bsky.social 🤩 I have added you to the rare genetic epilepsies starter pack 🧠🧬
#DravetSyndrome #GeneTherapy #CRISPR
#DravetSyndrome #GeneTherapy #CRISPR
Today is #RareDiseaseDay. ~72% of rare diseases are genetic—and #Dravetsyndrome is one of them. ~70% of genetic rare diseases start in childhood. Families deserve faster diagnosis, care & supports built for rare realities.
⏩ Share to widen awareness and urgency @rarediseaseday.bsky.social
⏩ Share to widen awareness and urgency @rarediseaseday.bsky.social
February 28, 2026 at 6:43 PM
Today is #RareDiseaseDay. ~72% of rare diseases are genetic—and #Dravetsyndrome is one of them. ~70% of genetic rare diseases start in childhood. Families deserve faster diagnosis, care & supports built for rare realities.
⏩ Share to widen awareness and urgency @rarediseaseday.bsky.social
⏩ Share to widen awareness and urgency @rarediseaseday.bsky.social
Stiripentol add-on to clobazam and valproic acid significantly reduced spontaneous seizure frequency in Scn1aA1783V/WT mice.
doi.org/10.1111/epi....
#epilepsy #ILAE #epilepsia #antiseizuremedications #Dravetsyndrome #hyperthermiainducedseizures #polytherapy #spontaneousrecurrentseizures
doi.org/10.1111/epi....
#epilepsy #ILAE #epilepsia #antiseizuremedications #Dravetsyndrome #hyperthermiainducedseizures #polytherapy #spontaneousrecurrentseizures
July 21, 2025 at 2:21 PM
Stiripentol add-on to clobazam and valproic acid significantly reduced spontaneous seizure frequency in Scn1aA1783V/WT mice.
doi.org/10.1111/epi....
#epilepsy #ILAE #epilepsia #antiseizuremedications #Dravetsyndrome #hyperthermiainducedseizures #polytherapy #spontaneousrecurrentseizures
doi.org/10.1111/epi....
#epilepsy #ILAE #epilepsia #antiseizuremedications #Dravetsyndrome #hyperthermiainducedseizures #polytherapy #spontaneousrecurrentseizures
Thank you! DSF has been a lifeline to our family since my son’s diagnosis last year. Ty for all you do! #dravetsyndrome #epilepsyawarenessmonth #epilepsy #disabilities
November 23, 2024 at 12:49 AM
Thank you! DSF has been a lifeline to our family since my son’s diagnosis last year. Ty for all you do! #dravetsyndrome #epilepsyawarenessmonth #epilepsy #disabilities
🔬 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
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
September 29, 2026 at 1:01 PM
🔬 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
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
Not all neurons shake during seizures… some stay surprisingly stable. See how NGG MD-PhD student Sophie Liebergall investigates how Ndnf interneurons are (or aren’t!) affected in a mouse model of Dravet Syndrome. www.upennglia.com/briefs/bib-n...
#neuroskyence #SciComm #Epilepsy #DravetSyndrome
#neuroskyence #SciComm #Epilepsy #DravetSyndrome
Not all neurons shake during seizures — GLIA
or technically, Ndnf Interneuron Excitability Is Spared in a Mouse Model of Dravet Syndrome [See original abstract on Pubmed]
www.upennglia.com
June 20, 2025 at 3:13 PM
Not all neurons shake during seizures… some stay surprisingly stable. See how NGG MD-PhD student Sophie Liebergall investigates how Ndnf interneurons are (or aren’t!) affected in a mouse model of Dravet Syndrome. www.upennglia.com/briefs/bib-n...
#neuroskyence #SciComm #Epilepsy #DravetSyndrome
#neuroskyence #SciComm #Epilepsy #DravetSyndrome
www.mdpi.com/2075-1729/15...
#Pedsky
#casereport of a 9½-year-old girl with #Dravetsyndrome who died in her sleep. In addition to mild 🧠 damage consistent with long-standing #epilepsy, the autopsy showed cellular interstitial pneumonia related to #covid infection.
www.mdpi.com/1873-149X/32...
#Pedsky
#casereport of a 9½-year-old girl with #Dravetsyndrome who died in her sleep. In addition to mild 🧠 damage consistent with long-standing #epilepsy, the autopsy showed cellular interstitial pneumonia related to #covid infection.
www.mdpi.com/1873-149X/32...
April 19, 2025 at 9:54 PM
www.mdpi.com/2075-1729/15...
#Pedsky
#casereport of a 9½-year-old girl with #Dravetsyndrome who died in her sleep. In addition to mild 🧠 damage consistent with long-standing #epilepsy, the autopsy showed cellular interstitial pneumonia related to #covid infection.
www.mdpi.com/1873-149X/32...
#Pedsky
#casereport of a 9½-year-old girl with #Dravetsyndrome who died in her sleep. In addition to mild 🧠 damage consistent with long-standing #epilepsy, the autopsy showed cellular interstitial pneumonia related to #covid infection.
www.mdpi.com/1873-149X/32...
NP-NPY was able to increase resistance against induced seizures in two models of SCN1A-derived epilepsy.
doi.org/10.1111/epi....
#epilepsy #ilae #epilepsia #Dravetsyndrome #nanoparticle #neuropeptideY #SCN1A
doi.org/10.1111/epi....
#epilepsy #ilae #epilepsia #Dravetsyndrome #nanoparticle #neuropeptideY #SCN1A
October 21, 2025 at 4:31 PM
NP-NPY was able to increase resistance against induced seizures in two models of SCN1A-derived epilepsy.
doi.org/10.1111/epi....
#epilepsy #ilae #epilepsia #Dravetsyndrome #nanoparticle #neuropeptideY #SCN1A
doi.org/10.1111/epi....
#epilepsy #ilae #epilepsia #Dravetsyndrome #nanoparticle #neuropeptideY #SCN1A
#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
🔗 Read the study: tr.ee/gImuyzfaFG
April 17, 2026 at 7:40 PM
#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
🔗 Read the study: tr.ee/gImuyzfaFG
DSF earned the highest ⭐⭐⭐⭐ Four-Star Rating from Charity Navigator (charitynav.bsky.social) — an independent trust signal reflecting our commitment to transparency, accountability, and responsible stewardship.
👉 tr.ee/CharityNav
#GiveWithConfidence #DravetSyndrome
👉 tr.ee/CharityNav
#GiveWithConfidence #DravetSyndrome
February 27, 2026 at 4:17 PM
DSF earned the highest ⭐⭐⭐⭐ Four-Star Rating from Charity Navigator (charitynav.bsky.social) — an independent trust signal reflecting our commitment to transparency, accountability, and responsible stewardship.
👉 tr.ee/CharityNav
#GiveWithConfidence #DravetSyndrome
👉 tr.ee/CharityNav
#GiveWithConfidence #DravetSyndrome
Our new paper in iScience is out! 🧠✨
“Variability vs Phenotype: multimodal analysis of Dravet Syndrome Brain Organoids powered by Deep Learning.”
#Neuroscience #Organoids #AI #DravetSyndrome
Open access 👇
www.cell.com/iscience/ful...
“Variability vs Phenotype: multimodal analysis of Dravet Syndrome Brain Organoids powered by Deep Learning.”
#Neuroscience #Organoids #AI #DravetSyndrome
Open access 👇
www.cell.com/iscience/ful...
Variability vs Phenotype: multimodal analysis of Dravet Syndrome Brain Organoids powered by Deep Learning
Dravet Syndrome (DS) is a developmental epileptic encephalopathy (DEE) driven by pathogenic
variants in SCN1A gene. Brain organoids (BO) have emerged as reliable models for neurodevelopmental
genetic ...
www.cell.com
October 27, 2025 at 2:53 PM
Our new paper in iScience is out! 🧠✨
“Variability vs Phenotype: multimodal analysis of Dravet Syndrome Brain Organoids powered by Deep Learning.”
#Neuroscience #Organoids #AI #DravetSyndrome
Open access 👇
www.cell.com/iscience/ful...
“Variability vs Phenotype: multimodal analysis of Dravet Syndrome Brain Organoids powered by Deep Learning.”
#Neuroscience #Organoids #AI #DravetSyndrome
Open access 👇
www.cell.com/iscience/ful...
It is #DravetSyndrome Awareness Month so here is my Dravet kiddo kitted out for a 24 hour ambulatory EEG, inadvertently doing the “imitate a famous painting” meme.
November 8, 2024 at 7:46 AM
It is #DravetSyndrome Awareness Month so here is my Dravet kiddo kitted out for a 24 hour ambulatory EEG, inadvertently doing the “imitate a famous painting” meme.
To use as a profile frame go to: www.twibbonize.com/dravetsyndrome
June 21, 2025 at 1:39 AM
To use as a profile frame go to: www.twibbonize.com/dravetsyndrome
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.
On #WorldGratitudeDay, Mary Anne Meskis shares a message of gratitude for everyone moving this mission forward.
September 21, 2026 at 2:02 PM
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.
On #WorldGratitudeDay, Mary Anne Meskis shares a message of gratitude for everyone moving this mission forward.
We would like acknowledge the @rhem-histology.bsky.social and the @mri-montpellier.bsky.social for their expert technical support in our recently published #Dravetsyndrome study in @NatureCommunications. Excellence in core facilities enables excellence in research. 🔬
#BioCampus #Montpellier #CNRS
#BioCampus #Montpellier #CNRS
March 19, 2026 at 4:25 PM
We would like acknowledge the @rhem-histology.bsky.social and the @mri-montpellier.bsky.social for their expert technical support in our recently published #Dravetsyndrome study in @NatureCommunications. Excellence in core facilities enables excellence in research. 🔬
#BioCampus #Montpellier #CNRS
#BioCampus #Montpellier #CNRS
Thrilled to share that our latest work on #DravetSyndrome is now out as a preprint! 🚀
This project, brilliantly led by @clarazourray.bsky.social and co-supervised by Serena Barral, brought together an incredible team.
A huge thanks to everyone involved, exciting science ahead! 👏
shorturl.at/NdC79
This project, brilliantly led by @clarazourray.bsky.social and co-supervised by Serena Barral, brought together an incredible team.
A huge thanks to everyone involved, exciting science ahead! 👏
shorturl.at/NdC79
Prenatal sodium channel dysfunction in Dravet syndrome alters cortical development
Neurodevelopmental disorders associated with epilepsy are typically linked to postnatal dysfunction of synaptic proteins and ion channels, yet increasing evidence suggests a role for these proteins be...
www.researchsquare.com
May 16, 2025 at 4:59 PM
Thrilled to share that our latest work on #DravetSyndrome is now out as a preprint! 🚀
This project, brilliantly led by @clarazourray.bsky.social and co-supervised by Serena Barral, brought together an incredible team.
A huge thanks to everyone involved, exciting science ahead! 👏
shorturl.at/NdC79
This project, brilliantly led by @clarazourray.bsky.social and co-supervised by Serena Barral, brought together an incredible team.
A huge thanks to everyone involved, exciting science ahead! 👏
shorturl.at/NdC79
Day 2 -High School - other than 3 seizures Cooper had another amazing day at school.
All 4’s again
FYI- He’s already crushing Dads high school GPA. 🤦♂️😂
More prayers were answered with today’s blessings !!!
#CooperStrong #DravetSyndrome
#epilepsy #specialneeds #blessed #love
All 4’s again
FYI- He’s already crushing Dads high school GPA. 🤦♂️😂
More prayers were answered with today’s blessings !!!
#CooperStrong #DravetSyndrome
#epilepsy #specialneeds #blessed #love
September 10, 2026 at 5:51 PM
Day 2 -High School - other than 3 seizures Cooper had another amazing day at school.
All 4’s again
FYI- He’s already crushing Dads high school GPA. 🤦♂️😂
More prayers were answered with today’s blessings !!!
#CooperStrong #DravetSyndrome
#epilepsy #specialneeds #blessed #love
All 4’s again
FYI- He’s already crushing Dads high school GPA. 🤦♂️😂
More prayers were answered with today’s blessings !!!
#CooperStrong #DravetSyndrome
#epilepsy #specialneeds #blessed #love
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
📖 Read: bit.ly/42h9ZWH
April 18, 2025 at 1:41 PM
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
📖 Read: bit.ly/42h9ZWH
Happy Sunday! It is #DravetSyndrome Awareness Month, and of course vaccines are in the news lately, so I thought I’d share some fun facts about how these two relate. In short: Dravet may explain “vaccine injury.”
November 8, 2024 at 4:48 AM
Happy Sunday! It is #DravetSyndrome Awareness Month, and of course vaccines are in the news lately, so I thought I’d share some fun facts about how these two relate. In short: Dravet may explain “vaccine injury.”
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 🗣️
We’re proud to support H.R.7118, H.R.6280/S.3607 & H.R.1189/S.494 🗣️
June 11, 2026 at 4:47 PM
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 🗣️
We’re proud to support H.R.7118, H.R.6280/S.3607 & H.R.1189/S.494 🗣️
⏰ Next Thursday, March 12 • 7:00 PM ET (Virtual)
Join DSF’s 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.
🔗 Register here: tr.ee/DSF-TownHall
#DravetSyndrome
Join DSF’s 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.
🔗 Register here: tr.ee/DSF-TownHall
#DravetSyndrome
March 4, 2026 at 6:05 PM
⏰ Next Thursday, March 12 • 7:00 PM ET (Virtual)
Join DSF’s 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.
🔗 Register here: tr.ee/DSF-TownHall
#DravetSyndrome
Join DSF’s 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.
🔗 Register here: tr.ee/DSF-TownHall
#DravetSyndrome