Prior to the end of March 2023, ganaxolone had received six separate Orphan Drug designations from the FDA; more recently, as shared in a news release from commercial-stage pharmaceutical…
Both Dravet syndrome and Lennox-Gastaut syndrome (LGS) are characterized by frequent and often severe seizures. In many cases, those affected require multiple medications to manage their condition and prevent epileptic…
According to a recent article, the parents of a boy with epilepsy were told they would need to prepare for him to have end-of-life care after they were unable…
As time runs out, volunteer Dominic Gillen is running even harder. In an interview with KETV, he admits that they are not yet where they should be in order…
Lennox-Gastaut syndrome (LGS) is a rare, severe form of epilepsy that is often resistant to anti-seizure medications. This means that patients still experience epileptic episodes despite treatment. Because of this…
Written by Denise Cardell, Shavertown, PA Jeff was diagnosed at age 9 with epilepsy. He was having seizures for at least six months before but I was told he was…
November 1st marks Lennox-Gastaut syndrome (LGS) Awareness Day, which is dedicated to patients living with this severe epilepsy syndrome. The LGS Foundation has organized this day to celebrate the resiliency…
According to a news release in Yahoo! Finance, biopharmaceutical company Zogenix, Inc. recently submitted a Supplemental New Drug Application (sNDA) for its drug candidate FINTEPLA (fenfluramine). The therapy is designed…
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 fairly recent news release from biopharmaceutical company Epygenix Therapeutics, Inc. ("Epygenix"), the company's therapy, EPX-200, received Orphan Drug designation from the FDA. Altogether, the therapy is designed…
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…
The American Academy of Neurology recently held their annual meeting virtually to discuss the latest research in Dravet Syndrome (DS) and Lennox-Gastaut Syndrome (LGS). This meeting was held April 17th through 22nd,…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Lennox-Gastaut syndrome (LGS) is a form of epilepsy. Most patients with this condition are resistant to current treatments and experience seizures throughout the duration of their life. They may face…
According to a story from gurufocus.com, the pharmaceutical company Zogenix, Inc., has recently announced top-line results from its phase 3 clinical trial. This trial is testing FINTEPLA® as a treatment…
According to a story from BioPortfolio, the biopharmaceutical company GW Pharmaceuticals plc recently announced that its medicine Epidyolex has earned recommendation from the UK National Institute for Health and Care…
The Sixth International Conference on LGS (Lennox-Gastaut syndrome) The LGS Foundation's annual international conference is a three day event that is ideally suited for LGS patients and their families, as…
November is Epilepsy Awareness Month! Epilepsy is a central nervous system disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of…
My son Nick has a rare, debilitating, life threatening disease called Lennox-Gastaut Syndrome (LGS). To learn more about LGS, click here. For over 38 years I have been consciously aware…
Happy Pre-Halloween Patient Worthians! October is Dwarfism Awareness Month. Not only that, MDS World Awareness Day was just two days ago! Get the deets below. We also have a story…
Check out part 1 of this LGS post here. After prepping: Arrive at the airport early – Ask the airline agent at check-in about getting your wheelchair assistance. Use this…
Traveling is certainly possible and can be more relaxing with some pre-planning and organization. Some of these ideas may not be applicable to you and your family. I have compiled…
Pack your bags LGS Warriors, your conference is headed to Orlando, FL this November! The LGS Foundation is holding it's fifth International Family and Professional Conference to promote collaboration between LGS…
The human brain is a mystery. Although enormous strides have been made to understand how it works and how our neuro pathways respond to various stimuli, there is still so…
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