I’m very happy to be at the Dravet syndrome conference with Clara Zourray 🌹 ready to enjoy interesting and inspiring talks!🧠 #RetoDravet #Dravetsyndrome #epilepsy
Our upcoming fellow James Dolbow Case Western Res Univ/UHCMC Neurology Residency and faculty member Neel Fotedar met with NeurologyLive® to discuss results from their yet unpublished study on association of limb swelling in patients with #DravetSyndrome Dravet Syndrome Foundation #AANAM #AAN2024
Junio 23 día Internacional del Síndrome de Dravet #dravet latam #dravet #sindromededravet #dravet syndrome #EnfermedadesRaras #epilepsy #epilepsia #Colombia #compartir
Great few days at #EDSAT23 in Madrid discussing #advancedtherapies for #DravetSyndrome with Juan Antinao Díaz and Raj Karda. Thank you to Dravet Syndrome Foundation Spain for a wonderful conference! See you next year!
So honored to speak at the #RareDisease Day conference. These moments are so emotional! When I started my speech, my heart was beating so fast. I shed a tear when I thought of my daughter 😢 I’m not an expert, I’m only a Dad #caregiver #EpilepsyVoices #Dravetsyndrome #RareDisease
I’ve been invited to share my daughter’s story living with #dravetsyndrome and #autism spectrumdisorders during a regional conference about #autism 😊30% of people with #epilepsy are diagnosed with autism! #EpilepsyVoices #braindisorders #speechdelay #WorldAutismAwarenessDay 💙
I dream of a world where #epilepsy can not just be treated but cured🤞😢 Wake up sweetheart please! Dad will never give up ✊ #seizure #genetic #mutation #scn1a #dravetsyndrome #braindisorder #speechdelay #cognitivedelay #caregivers #idream #researcher #Neurology #weneedacure
Published in American Epilepsy Society,UCSF Benioff SF' Joseph Sullivan, MD, and Mayo Clinic’s Elaine C. Wirrell, MD, review new antiseizure medications and potential disease-modifying therapies for #DravetSyndrome Dravet Syndrome Foundation UCSFepilepsy journals.sagepub.com/doi/10.1177/15…
Our latest #TenantSpotlight is out! Learn about Regel Tx's co-founder & CSO @NavneetKMatharu and her mission to help patients suffering from rare diseases using a new approach to #genetherapy : bakarlabs.berkeley.edu/tenant-spotlig… #DravetSyndrome
👇 Fluvax very important for people with #dravetsyndrome
Prof Ingrid Scheffer Prof Margie Danchin
Encoded announces approval of UK CTA application for clinical study of gene therapy candidate ETX101 for Dravet syndrome. Phase 1/2 clinical trial in the UK is planned to begin in mid-2024. More: ow.ly/hMVB50QHY2P
#GeneTherapy #DravetSyndrome #ETX101 #POLARIS #EXPEDITION
'The exercise helps with her very stiff limbs, mobility & is excellent for her mental health. Amy loves making the most of her pool membership, funded through the 16+ Assistance Fund. Thank you DSUK.' Glenys - Mum to Amy who lives with #DravetSyndrome .
dravet.org.uk/apply-for-gran…
It was found that at 3 months posttreatment, the 8 patients who received a single 70mg dose showed a mean 43% reduction from baseline in convulsive seizure frequency.
#Dravet Syndrome #Dravet #AntisenseOligonucleotide Stoke Therapeutics
Read more:
cgtlive.com/view/stoke-the…
Did you know that people with #Autism are more likely to have #Epilepsy ?My daughter has #Dravetsyndrome a rare and severe form of epilepsy associated to #autismspectrumdisorders . Autism is not a #Disability ! It’s a different #Ability 😉 #WorldAutismAwarenessDay #scn1a #dravet
DREXCO STUDY
A call to the Dravet syndrome community! We are conducting a very important study to better understand this condition. If you have a confirmed SCN1A mutation, your participation is crucial! #dravetsyndrome Ruber Internacional
The Stoke team gathered for #PurpleDay , representing our ongoing support for epilepsy communities, including those living with and impacted by #Dravetsyndrome .
#EpilepsyAwarenessDay 💜
Families registered with us have the option to receive handwritten birthday cards, not only for their child/adult living with #DravetSyndrome , but their siblings too.
'Each card is handwritten & addressed directly to them, making them feel special' - Rachael (Parent/Carer)
It was found that at 3 months posttreatment, the 8 patients who received a single 70mg dose showed a mean 43% reduction from baseline in convulsive seizure frequency.
#Dravet Syndrome #Dravet #AntisenseOligonucleotide Stoke Therapeutics
Read more:
cgtlive.com/view/stoke-the…