Scientific Director at the Dravet Syndrome Foundation; PhD from CU-AMC. Views and opinions are my own. Science & advocacy with a splash of puppies and TheOffice
📢If you want to challenge yourself with an exciting gene therapy project for DEEs and join a fantastic, passionate and motivated team, do not hesitate to apply for this position.
2024 DSF Research Grant applications are now open!
We offer five grant categories! To find out more details about each grant category and apply today, visit https://t.co/yBW7Kylc37!
Welcome to the 2024 DSF Family & Professional Conference! 🌟 Now that our setup is complete, we’re ready to embark on a journey of learning, sharing, and connecting with all of you.
We just spoke with a trio of experts this morning on limb swelling in #Dravet syndrome at #AANAM! Featured below are Mandy Alhajj, DO, James Dolbow, DO, & Neel Fotedar, MD, from @UHhospitals. @AANmember@curedravet
I'm looking forward to hearing more from Dr. Papedlis about his work on biomarkers for #Dravet at the upcoming DSF Conference! Are you joining us? See the agenda and register: https://t.co/Mdboxe5PMf
At UCB, we understand the power of listening to and learning from patient communities to help us deliver better outcomes. This #PurpleDay2024, learn from rare #epilepsy leaders Karen and Veronica in our most recent episode of Raring to Listen.
Click to listen⬇#EpilepsyAwareness
As Scientific Director for @curedravet, Dr. Veronica Hood understands the power of patient communities coming together and advocating to solve unmet needs. Hear more from Dr. Hood in the latest episode of UCB’s Raring to Listen. 📻
Catastrophic neurological disorders in children are often caused by a single gene mutation. Most have no effective treatments, making it a huge unmet need. @hcmefford, MD, focuses on neurological diseases like epilepsy & works with PTNI to alter the landscape of these disorders.
This position is still open for US board certified epileptologists who want to care for people (adult+peds) with genetic forms of epilepsy. Strong clinical genetic support and research environment provided.
Time is ticking... The #ILAE e-Forum: Optimal models of care during transition from childhood to adulthood is in 2 DAYS on 16 February at 14:30 UTC. Register now for free and gain access to the pre-reading materials: https://t.co/V9K4r9EKtf.
#epilepsy#epilepsyeducation@yesILAE
An important announcement this morning for the #Dravet community as Encoded Therapeutics shares regulatory clearances enabling them to move forward with trials for their #genetherapy candidate in the US and Australia
https://t.co/xpbdnZRJg4
"A comprehensive & innovative approach to reduce sudden death in patients with epilepsy.”
Our SUDEP & Seizure Safety Checklist is a simple tool that enables health professionals to have that conversation with patients about risk safety.
Find out more: https://t.co/s7iua0XJ3v
Key point: "Discovery of SCN1A variants as genetic biomarkers for Dravet syndrome has aided diagnosis & may partly explain the higher number of articles identified for Dravet syndrome than Lennox–Gastaut syndrome."
Find this & more from @EpilepsiaJourn at https://t.co/KvicAPlGGO.
A heartfelt 💟Thank You💟 from #TeamDSF to each and every member of our incredible community. Your unwavering support, generous donations, and inspiring stories fuel our mission every day. 💜🦋 #dravet#dravetsyndrome
Here are my main insights from #AES2023
-Epilepsy as a collection of rare diseases
-Gene therapies also for non-genetic epilepsy
-All syndromes need better treatments, even #Dravet
-The 3 mountains to climb for dis-mod therapies
-Impressive patient groups
https://t.co/3mG1FI4ld5
@curedravet kicked off the weekend at #AES2023 by bringing together researchers, physicians, advocates, & industry for their annual Research Roundtable, which focused on research projects the DSF has funded to address challenges associated with Dravet syndrome and other DEEs.
We greatly appreciate the funding support provided by @curedravet to work w/ @LoriLIsom1 on a new #MGE transplantation project in rabbits
https://t.co/hgejywF0X1