Lennox-Gastaut Syndrome (LGS) Foundation

The recordings from the 9th International Family & Professional Conference are now available online! Whether you attended the conference or couldn't make it in person, we hope you’ll take the opportunity to explore the wealth of knowledge shared during the sessions. https://ow.ly/8EuV50Tm1hl #LennoxGastautSyndrome #Epilepsy

Explore our '30 Ways in 30 Days' guide to raising awareness of LGS now, to plan ahead on how you'll get involved! As part of International LGS Awareness Day and Epilepsy Awareness Month, each day offers a new way for you to get involved and make a difference. Together, we can shine a light on LGS! 👉 Download Here: https://lnkd.in/eAQ7iUgn Thank You to our Platinum International LGS Awareness Day Partner Jazz Pharmaceuticals for your support! #LennoxGastautSyndrome #LGSAwareness #EpilepsyAwarenessMonth

Data from a European study revealed several significant challenges and unmet needs in #LGS, including delayed diagnosis time, poorer quality of life, and numerous concomitant morbidities. Overall, these findings underline the need for new treatments that target both drug-resistant seizures and the non-seizure symptoms of LGS. #EEC2024 International League Against Epilepsy UCB Lennox-Gastaut Syndrome (LGS) Foundation https://lnkd.in/eCgjCGAa

Happy Grandparents Day! 💜 Let's take a moment today to celebrate and honor the extraordinary grandparents who bring immense blessings to the lives of individuals within the LGS community. #LennoxGastautSyndrome #Epilepsy #GrandparentsDay

The LGS Foundation is dedicated to providing a comprehensive LGS Learning and Resource Center for all! 💜 We at the LGS Foundation believe it is important for families living with LGS and those who provide support to LGS families to be able to recognize different seizure types. However, there is a lack of detailed, accurate information on the internet as to what seizure types may look like, which is why we created this resource. 👉 Learn more about different seizure types on our website: https://lnkd.in/eb2Yjzyg #LennoxGastautSyndrome #SeizureSafety #Seizures #Epilepsy

We’re honored to announce that we’ve been selected as a 2024 #RAREis Global Advocate Grant recipient by Amgen’s #RAREis program. This recognition underscores our unwavering commitment to the LGS Community and the rare disease community at large, who inspire us every day with their strength and resilience amid care and research barriers. With this #RAREisGrant, we’re motivated to continue raising awareness and expanding our efforts in education and advocacy for all those impacted by #LennoxGastautSyndrome. Learn more here: https://bit.ly/3Z6sfSP

🎉 Get ready to BE BOLD at the LGS Foundation's Annual Awareness Dinner on November 2nd! We're thrilled to announce that our emcee this year is the incredible Ben Decter, of the musical “It’s ALL Your Fault Tyler Price.” Ben embodies boldness by bravely sharing his story and shining a light on epilepsy and Lennox-Gastaut Syndrome through this powerful musical. 🌟 Join us for an unforgettable evening of awareness, inspiration, and unity. Let's stand together, stronger than ever, in our fight against LGS. 💜 👉 Learn More & Get Your Tickets: https://lnkd.in/dbmiTWFd #LGSAwareness #LennoxGastautSyndrome #StandingTogether #StrongerTogether #BeBold

Meet Mike 👋 Mike McConnell, PhD joined the LGS Foundation as the Scientific Director in July. In this role, he leads the Cure LGS 365 Research Grants Program, organizes the scientific program for our bi-annual research symposium Meeting of the Minds, assists with the LGS Registry in partnership with the National Organization of Rare Disorders (NORD), and participates in the Chan-Zuckerberg Initiative (CZI)’s “Rare As One” network. Mike brings a wealth of experience in neuroscience, stem cells, and genomics. With a strong background in research and patient advocacy, Mike is dedicated to speeding up rare disease research. He says, “I like being busy. But now everything I’m busy with really matters.” Mike currently lives in Charlottesville, VA with his wife, two daughters, and their dog Mac. Learn more about Mike: https://lnkd.in/eHdJfEnm #LennoxGastautSyndrome #MeetTheTeam

Meet Julian! Julian's journey began with some difficulties at birth, and he was diagnosed with cerebral palsy at 6 months old. While he may not have met typical milestones like crawling or walking, Julian's spirit shines through in everything he does. He experienced his first seizure at one year old and was later diagnosed with LGS at age 4. Though he has daily seizures, Julian’s resilience and joy remain unwavering. What truly stands out about Julian is his happiness. He’s always ready with a smile and loves giving fist bumps, brightening the day of everyone around him. His positivity and determination bring a smile to everyone he meets. 👉Learn more about Julian at https://lnkd.in/dU7qhTFA #Julian #LGSAwareness #LennoxGastautSyndrome

Raise awareness of #LennoxGastautSyndrome in your community with a custom LGS Awareness Yard Sign! Check out our Yard Signs: How To Guide for any easy step by step guide to personalizing and ordering your sign today: 👉 https://ow.ly/awNV50SX5yB 👈 Thank You to Our International LGS Awareness Day Partners: Jazz Pharmaceuticals, Longboard Pharmaceuticals, UCB, Takeda Pharmaceuticals, and Assertio Pharmaceuticals. #LGSAwareness #EpilepsyAwarenessMonth