Pickleball Fundraiser Supports Boy with SLC6A1
When you think of effective fundraisers, do you think of pickleball? Well, a Kansas community did just that. According to a video and transcript on KMBC News 9, his community…
When you think of effective fundraisers, do you think of pickleball? Well, a Kansas community did just that. According to a video and transcript on KMBC News 9, his community…
According to an August 17, 2021 news release from pharmaceutical company Marinus Pharmaceuticals, Inc. (“Marinus”), data is available from a Phase 2 clinical trial evaluating oral ganaxolone for patients…
It’s no secret that cannabis and its components are highly controversial. However, cannabis has been used to treat a variety of conditions, including seizures. According to Candid Chronicle, another related…
Rachel Ablondi recently wrote an article expressing her journey and thoughts on her son's life with Lennox-Gastaut syndrome (LGS) in an effort to get a message across to doctors. While…
According to a recent news release, the Lennox-Gastaut Syndrome (LGS) Foundation shared that its 6th Annual Walk 'n' Wheel event will take place on June 5th, 2021. The event…
Inbrain Neuroelectronics has announced that they have raised 16.8 million dollars which will support clinical testing of a new device for Parkinson's disease as well as epilepsy. This is a…
According to a recent press release, neuropharmaceutical company NeurAegis Inc. shared the publication of some study data which explored calpain-2 as a potential therapeutic target for status epilepticus (SE). The…
Have you ever heard a song and heavily related to it? As though it was speaking directly to you? This is how I felt when I first heard German singer-songwriter…
According to a recent press release from biopharmaceutical company Praxis Precision Medicines ("Praxis"), two of the company's drug candidates received either Orphan Drug or Rare Pediatric Disease designations for rare…
Recently, specialty pharmaceutical company Xeris Pharmaceuticals ("Xeris") announced that its injectable treatment XP-0863 received Fast Track designation for the treatment of patients with acute repetitive seizures. Xeris created this treatment…
Eisai has announced that they will begin a Phase 3 trial, titled MOMENTUM, to evaluate lorcaserin as a treatment for Dravet syndrome. This decision comes after a consultation with the…
Developmental and epileptic encephalopathies (DEEs), or rare epilepsies, are somewhat of a newer topic. However, researchers are already making strides in creating treatments to address unmet patient needs. On…
Three people with an eye on the future talk about their innermost feelings and the fact that their lives may be interrupted at any time by their chronic illness.…
In a recent press release, Knopp Biosciences announced that their drug therapy KB-3061 was granted Rare Pediatric Disease Designation to treat patients with KCNQ2 epileptic encephalopathy (KCNQ2-EE), a rare…
When it comes to researching and finding treatments for rare diseases, funding plays a crucial role. Recently, the Medical Research Future Fund (MRFF) Stem Cell Therapies Mission presented Monash…
In a story from MedCity News, while some studies grind to a halt with coronavirus restrictions, some of the medical world is using the new limitations to formulate creative solutions…
As reported in Vox, Amber Freed set into to motion when she learned her son Maxwell's genetic disorder made him just the 34th in the world to be diagnosed with…
As reported in Dravet Syndrome News, in a new study, researchers created an artificial intelligence system which could diagnose epileptic conditions more rapidly and easily than existing systems. Epilepsy is…
By Natalie Homan from In The Cloud Copy It’s estimated that about 3.4 million Americans have epilepsy, one of many conditions that can cause seizures. Seizures occur when there is…
Ashlyn Sanders was a graduate student at Duke University when she experienced her first seizure. The UNC alumna was shocked. She pursued an MRI, which ended up discovering a…
Researchers from the Murdoch Children’s Research Institute (MCRI) have recently discovered a previously unknown and uncharted neurodegenerative disorder. This rare disorder, which has not yet been named, affects children. It…
Researchers at the Medical Center of Hackensack University conducted a study of three drugs now proven to be safe and effective for the treatment of severe seizures. According to…
Marinus Pharmaceuticals has recently announced updates on its ganaxolone programs for tuberous sclerosis complex (TSC), PCDH19-related epilepsy (PCDH19-RE), and CDKL5 deficiency disorder (CDD). Ganaxolone Ganaxolone is a positive allosteric modulator…
That’s right- HOBSCOTCH NOT hopscotch, and you don’t need a sidewalk and chalk to play it. The Epilepsy Foundation of Virginia (EFVA) has been looking out for you, and applied…
According to a press release from the British biotechnology company GW Pharmaceuticals, the company has reported successful results at the conclusion of its phase 3 trial of tuberous sclerosis complex…