uncategorized

April 9, 2020April 9, 2020

Epidiolex No Longer Seen as Controlled Substance by US DEA

uncategorized

The U.S. Drug Enforcement Administration (DEA) has reclassified Epidiolex, an oral cannabidiol solution used to treat seizures, as a non-controlled substance, potentially easing patient access to it. This decision removes all federal ... Read more

April 2, 2020April 2, 2020

Epidiolex More Effective than Artisanal Cannabidiol for Controlling Seizures, Early Study Suggests

uncategorized

Oral treatment with pharmaceutical cannabidiol (CBD), sold under the brand Epidiolex, seems to be more effective to control seizures than artisanal preparations of CBD, in children and young patients with ... Read more

April 2, 2020April 2, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

uncategorized

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. ... Read more

March 26, 2020March 26, 2020

Spontaneous Mutations Linked to LGS in 2 Boys, Study Reports

uncategorized

Spontaneous mutations affecting a critical protein produced in nerve and muscle cells, called EEF1A2, were found to be the underlying cause of Lennox-Gastaut syndrome (LGS) in two boys in China, a ... Read more

March 26, 2020March 26, 2020

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

uncategorized

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The ... Read more

March 19, 2020March 19, 2020

ELEKTRA Trial Testing Soticlestat Completes Early Enrollment of Children With LGS, Dravet

uncategorized

The ELEKTRA trial testing the investigational oral therapy soticlestat (OV935/TAK-935) in children with Lennox-Gastaut syndrome (LGS) and Dravet syndrome has completed patient enrollment, Ovid Therapeutics has announced. “We completed enrollment significantly ahead of ... Read more

March 12, 2020March 12, 2020

Anti-seizure Therapy Banzel Safe, Effective in Children, Adolescents with LGS, Review Finds

uncategorized

Banzel (rufinamide) — an approved add-on, anti-seizure oral therapy — is safe and effective in lowering seizure rates in children and adolescents with Lennox-Gastaut syndrome (LGS), according to a review study. ... Read more

March 5, 2020March 5, 2020

LGS Patients with Mitochondrial Dysfunction May Benefit from Keto, Small Study Suggests

uncategorized

Following a ketogenic (high-fat, low-carb) diet may help reduce seizures and improve cognitive function in Lennox-Gastaut syndrome (LGS) patients with dysfunctional mitochondria, a small study from Korea suggests. The researchers highlighted patients’ ... Read more

February 27, 2020February 27, 2020

Fintepla Cuts Lennox-Gastaut Drop Seizure Frequency, Trial Shows

uncategorized

Fintepla (ZX008), an investigational therapy from Zogenix, significantly lowered the frequency of drop seizures and was well tolerated in children and adults with Lennox‑Gastaut syndrome, according to topline results from ... Read more

February 18, 2020February 18, 2021

Risk of Aspiration Pneumonia in Adult Epilepsies Highlighted By 3 Cases

uncategorized

Three adults with drug-resistant epilepsy, one of whom was diagnosed with Lennox-Gastaut syndrome (LGS), developed aspiration pneumonia — a potentially life-threatening lung infection — after starting treatment with the anti-seizure ... Read more