NBC 5 helped us kick off Epilepsy Awareness Month last night with a feature story about a Cook Children’s patient who’s now three years seizure free thanks to a groundbreaking clinical trial.Miller Queen suffers from a severe and debilitating form of...
Feb. 28 is Rare Disease Day. But you might be surprised to learn many of these diseases really aren’t as “rare” as you might think.
A rare disease is defined as any disease affecting fewer than 200,000 people in the U.S.1 While individually, each ...
While most of us know Fenfluramine as one of two components in a notorious weight loss drug, researchers are finding it has remarkable potential for the treatment of rare genetic epilepsy syndromes.
Cook Children’s recently participated in multice...
An epilepsy treatment derived from the cannabis plant took a major step toward approval from the Food and Drug Administration today. Epidiolex, an oil-based purified cannabidiol (CBD), has been studied specifically in two rare epilepsy syndromes - Le...
SCN2A is a gene found on chromosome 2 position 24.3 and thus 2/24 is celebrated as SNC2A Awareness Day worldwide. A rare cause of epilepsy, SCN2A mutations have also been discovered as a cause for intellectual disability and autism. To raise awarenes...
The Texas Compassionate Use Act (Senate Bill 339) was signed by Gov. Greg Abbott and became effective June 1, 2015. The bill required the Texas Department of Public Safety to create a secure registry of physicians who treat epilepsy for the purpose o...
Could a component of the diet pill “fen-phen” be the answer for patients with a severe form of epilepsy known as Dravet syndrome?
Fenfluramine was originally used as a weight-loss drug before being pulled from the market in 1997 with reports that ...
Today is Dravet Awareness Day. To learn more about Dravet, we sat down with Scott Perry, M.D., medical director of Neurology and co-director of the Jane and John Justin Neurosciences Center. Dr. Perry has done multiple research studies on Dravet Synd...