Lennox-Gastaut Syndrome (LGS) Foundation

??Save the Date for the LGS Research Meeting of the Minds?? July 21 – 23, 2025 Philadelphia, PA This bi-annual conference brings together hundreds of researchers, healthcare providers, clinical trialists, scientists, advocates, caregivers, and industry partners to push the conversation about research beyond only treating the symptom of seizures, but also finding treatments that target the whole syndrome. Learn more: https://lnkd.in/eMezEASC

Thank you for being bold with us at this year's LGS Foundation Awareness Dinner! Thanks to our supporters, we can continue our essential mission of providing life-changing resources, care, and hope to families affected by LGS. The funds raised during the LGS Awareness Dinner will have a direct and lasting impact on our programs and families and will help fuel critical awareness initiatives, enhance educational efforts, and support groundbreaking research that brings us closer to finding the cures. “Life is filled with profound moments – some filled with joy, others filled with pain and struggle. Yet even in those darkest moments, we have the resilience to transform suffering into growth. Each day presents an opportunity to live boldly and embrace every experience as an opportunity for deeper connection and wisdom.” – Kathy Leavens, Mom to Matthew, Senior Director of Programs #LennoxGastautSyndrome #LGSAwareness

#LennoxGastautSyndrome (#LGS) presents unique challenges that evolve over time. In this CME BriefCase, faculty experts Dr. Elizabeth Thiele and Dr. Tracy Dixon-Salazar dive into real-world case examples, exploring how a collaborative and multidisciplinary approach can optimize care for patients with #LGS and #DEEs. Learn how to personalize treatment plans and improve outcomes for patients and caregivers. Watch now: cmeo.me/BC-126-LGS #Epilepsy #LGSawareness Lennox-Gastaut Syndrome (LGS) Foundation

#teamUCB sharing the highlights video from the 2024 Lennox-Gastaut Syndrome (LGS) Foundation Family & Professional Conference featuring insights from LGS caregivers, LGS volunteers, and industry partners who share their great experiences from the conference. ?? Stay connected by visiting our Shine Forward with LGS website at https://lnkd.in/gaz9EZ-D for sibling support, caregiver tips, and other useful resources from other LGS caregivers in the community. ? #ShineForwardWithLGS #LGSAwareness #Epilepsy #RareDiseases #Seizures #LennoxGastautSyndrome #EpilepsyAwarenessMonth #WeAreUCB 2024 UCB, Inc., Smyrna, GA 30080. All rights reserved. Jason Joseph Kathy M. Shearer Laurie Bailey Lara Falcon Andrea L. Wilkinson Marcelo Diaz-Bustamante Mercedes Martin Susie Kim Kelly Fischbein Marissa Vitha Alexandra Mottern Beck Reyes,NP Ben Decter Sean Murphy Tyler Trent Kathy Leavens Robert Moss M. Scott Perry Kurt Oberhausen Carmen Parker-Ward CEO, MBA, Life Coach Jordan Bradley

?? Giving Tuesday is fast approaching on December 3rd, making this a crucial time to support the LGS Foundation! ?? Did you know that 75% of people with LGS experienced seizures every day last week? Your generosity this #GivingTuesday will help us raise essential funds to advance research and provide much-needed support for LGS families. Together, we can make a meaningful impact for those living with LGS. ?? Learn more: https://lnkd.in/eC7ayntx #LennoxGastautSyndrome #EpilepsyAwareness #GivingSeason

Meet Ayaz, a joyful young boy whose spirit shines despite the challenges of Lennox-Gastaut Syndrome. Diagnosed at 17 months, Ayaz’s journey has involved many treatments, including holistic approaches that brought some relief. Although his seizures returned, Ayaz continues to light up every room with his infectious smile and warm high-fives, spreading happiness to everyone he meets. Ayaz’s strength and positivity are a true inspiration to all. ?? Read more about Ayaz’s journey here: https://lnkd.in/ePgbBiVG #LennoxGastautSyndrome #Epilepsy

Dr. Tracy Dixon-Salazar Executive Director Lennox-Gastaut Syndrome (LGS) Foundation will be speaking at our upcoming webinar: Developmental & Epileptic Encephalopathies (DEE) Now & Next Dr. Dixon-Salazar is a neuroscientist and geneticist driven by a deeply personal mission. Her daughter Savannah's diagnosis of Lennox-Gastaut Syndrome (LGS), fuelled her pursuit of a Ph.D. and postdoctoral work at UC San Diego. Through tireless research, she pinpointed the genetic cause of Savannah's condition and developed and identified a novel precision therapy that improved her child’s life. Hear this story of hope and other stories at our upcoming event. ??? Wednesday November 20th ? 7.30 pm CET ?? Simultaneous translation will be available in French, Italian, and Spanish. More information and registration information is available at: https://bit.ly/DEE_Webinar

Join the LGS volunteer movement! The LGS Foundation relies on dedicated volunteers to help drive our mission and realize a future where everyone impacted by LGS can live life to the fullest. ??Get involved now https://lnkd.in/e4QbVmEh #LennoxGastautSyndrome #30Waysin30Days #LGSawareness #EpilepsyAwarenessMonth #IlluminateForLGS

"I support the LGS Foundation to honor the memory and legacy of my son, Brian, who succumbed to the ravages of Lennox-Gastaut Syndrome. It is our family's hope that our financial support will help those currently affected by LGS to have a different outcome. Significant medical and diagnostic progress has been made since Brian's passing eight years ago. New drug therapies, effective surgical options, refined genetic testing and ground-breaking caregiving technologies are now available. This progress did not just happen. It is the result of tireless advocacy by LGS families and the research funding efforts of the LGS Foundation. This momentum toward quality-of-life improvements and LGS cures must continue! Financial support for the LGS Foundation is the only way this progress continues." - Fred Roedl, Vice Chair of the LGS Foundation Board of Directors ?? Learn more at https://ow.ly/1guH50U4sxQ ?? . . #WhyIGive #ElevateHope #TransformLives #LennoxGastautSyndrome

In a recent interview, Melanie Huntley, PhD, 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. #LGS Lennox-Gastaut Syndrome (LGS) Foundation