Lennox-Gastaut Syndrome Foundation

Experts noted that the Lennox-Gastaut Syndrome Foundation is a welcoming platform for collaboration, research advancement, and career development in the field. [WATCH TIME: 3 minutes]

Experts discussed strategies to improve LGS clinical trial design, better understand comorbidities in rare epilepsies, and foster collaboration across stakeholders. [WATCH TIME: 5 minutes]

Experts discussed gaps in LGS research, including biomarker development, sleep assessment, and early intervention strategies to improve diagnosis and outcomes for patients. [WATCH TIME: 6 minutes]

Experts underscored that stakeholder collaboration, including clinicians, caregivers, and industry partners, can play a critical role in advancing understanding and management of LGS. [WATCH TIME: 3 minutes]

Experts discussed initiatives to standardize data collection, expand registries, and empower families in advancing care for Lennox-Gastaut syndrome. [WATCH TIME: 3 minutes]

Experts highlighted the need for clearer treatment sequencing and improved transition of care for patients with LGS from childhood to adulthood. [WATCH TIME: 3 minutes]

The data scientist at Roche and mother of a child living with Lennox-Gastaut syndrome, provided insight on areas of the disease that need greater recognition, as well as an overview of how the disease is currently treated. [WATCH TIME: 4 minutes]

Ahead of International LGS Awareness Day, Melanie Huntley, PhD, a data scientist for Roche and mother of child with Lennox-Gastaut syndrome, shed light on the realities of living with LGS, emphasizing the need for greater awareness of the condition’s impact.

The head of neurosciences at the Jane and John Justin Neurosciences Center of Cook Children’s Medical Center provided commentary on the need to properly diagnose Lennox-Gastaut syndrome and the negative downstream impacts of misdiagnosis or underdiagnosing patients.

Fenfluramine was originally approved as a therapy for Dravet syndrome in 2020, and later gained expanded indication for Lennox-Gastaut syndrome in 2022.

After nearly a year of treatment with fenfluramine, more than half of patients with Lennox-Gastaut syndrome demonstrated at least a 50% reduction in drop seizure frequency.

Joseph E. Sullivan, MD; Kelly Knupp, MD; Mary Anne Meskis; and Tracy Dixon-Salazar, PhD, share insight into the patient and provider journey of LGS and Dravet syndrome, from diagnosis through treatment.

How Tracy Dixon-Salazar, PhD, the executive director of the LGS Foundation, went from a new mother to a neuroscientist, and her decades-long quest to improve the lives of patients like her daughter, Savannah.

In recognition of Rare Disease Day, the NeurologyLive® team offered an extensive update on the state of care and treatment for a wide range of rare neurological diseases, including Kleine-Levin syndrome, amyotrophic lateral sclerosis, cerebral palsy, Lennox-Gastaut syndrome, and more.

The grant will fund a new study to evaluate the effectiveness of brain-responsive neuromodulation in patients with LGS. The study is expected to begin accepting patients in the second half of 2022.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details how advocacy organizations can help guide patients with epilepsy and their caregivers with a seizure action plan.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details how seizure action plans change from pediatrics to adults and the need for adjustments.

"Mind Moments," a podcast from NeurologyLive, brings you an exclusive conversation with Scott Perry, MD; Orrin Devinsky, MD; and Tracy Salazar, PhD.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details the way seizure action plans can differ depending on seizure phenotype and frequency of seizures.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, covers the staggeringly low percentage of adults with epilepsy who have seizure action plans.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, covers the logistics behind a seizure action plan and why its necessary to develop one.

The section chief of pediatric neurology at Nationwide Children’s Hospital discussed his experience using some of the approved medications for patients with Lennox-Gastaut syndrome.

An overview of the NeurologyLive tweet chat honoring National Epilepsy Awareness Month, featuring highlighted contributions from the medical community.

The section chief of pediatric neurology at Nationwide Children’s Hospital spoke about the effect telemedicine has had on patients with Lennox-Gastaut syndrome throughout the COVID-19 pandemic.

The section chief of pediatric neurology at Nationwide Children’s Hospital provided his thoughts on raising awareness for Lennox-Gastaut syndrome on International LGS Day.

The section chief of pediatric neurology at Nationwide Children’s Hospital discusses some of the challenges that patients with Lennox-Gastaut syndrome and their caregivers face.

Singer and former GLEE cast member Noah Guthrie will be featured during the 1-day event.

The 7th International LGS Foundation Family Conference features interactive Q&A's, breakout sessions, interactive games, and access to the after party with LGS caregivers.