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Dravet Syndrome

All articles tagged with #dravet syndrome

health1 month ago•67 min saved

Promising antisense drug could alter Dravet syndrome in children

An early-stage trial suggests the antisense drug zorevunersen is safe for children with Dravet syndrome and may dramatically reduce seizures, with the highest-dose group seeing 59%–91% fewer seizures after about 20 months and potential neurodevelopmental and quality-of-life benefits. The study involved 81 children (ages 2–18) in the UK and US and did not include a placebo; larger, controlled trials are underway, with results expected by 2028 to determine if the treatment can alter the disease course.

via Live Science|

#antisense-oligonucleotide #dravet-syndrome #epilepsy

health1 month ago•3 min saved

New drug brings life-changing relief to children with Dravet syndrome

A new drug, zorevunersen, delivered by spinal infusion, is showing strong promise for Dravet syndrome in children by boosting brain sodium channel activity and dramatically reducing seizures; early trials report up to 90% fewer seizures, with patients like Freddie Truelove moving from hundreds of daily seizures to a few per week and regaining normal activities. UK and US trials involve young children, starting from age two, at several hospitals, and while results are encouraging, Phase 3 data are needed before it becomes widely available.

via BBC|

#clinical-trial #dravet-syndrome #epilepsy

human-interest2 years ago•3 min saved

"Des Moines Man Overcomes Challenges, Joins RAGBRAI with Adaptive Bike"

Quincy Hostager, a 21-year-old man diagnosed with Dravet syndrome, a severe form of epilepsy, will be riding in a portion of RAGBRAI with the help of an adaptive bike. The bike, received as a gift from the Make-A-Wish Foundation, allows Quincy to bike with his family, with his dad pedaling behind him. Quincy's ride in RAGBRAI will also serve as his high school graduation party, with family and friends gathering to celebrate his accomplishments. The family is also raising funds for a great cause, promoting the idea that anyone, regardless of ability, can enjoy biking.

via KCCI Des Moines|

#adaptive-bike #dravet-syndrome #graduation-party