The LGS Foundation is dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.
San Diego, CA
Joined October 2009
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LGS Foundation retweeted
Many adults with #DEEs are undiagnosed and, as a result, tend not to receive up-to-date DEE care and are likely excluded from DEE clinical trials. We propose several solutions, including an adult-specific diagnostic framework & expanded DEE education.
onlinelibrary.wiley.com/doi/…
💡 Did you know that participating in the LGS-CORE Study can connect you with clinical trials and research studies? You choose whether you want to hear about these opportunities, no pressure, just possibility.
👉 Learn more and register: lgsfoundation.org/lgs-regist…
From a small seed grant to a major breakthrough. Our funding helped spark a new collaboration between Focused Ultrasound Foundation and CURE Epilepsy exploring non-invasive sound wave treatment for LGS. No surgery. Real hope. Read the full story: lgsfoundation.org/research-s…
Our President @TracyDixonSalaz's path from stay-at-home mom to neurogeneticist is well known. Less known: the self-taught research that helped identify genes tied to pediatric neurodevelopmental disease, including her own daughter's LGS mutation.
bit.ly/4cLJxdS
LGS Foundation retweeted
Following the 2026 LGS Conference, epilepsy expert Cynthia Keator, MD, sat down to discuss building a sustainable care plan for patients and families 👪 with Lennox-Gastaut Syndrome 🧠
@LGS_Foundation @PERCepilepsy
Listen in below: hubs.li/Q04sMftz0
🎉 Today, the LGS Foundation turns 18! 💜
For 18 years, we've advanced research, supported families, educated healthcare professionals, and advocated for a brighter future for everyone impacted by LGS.
Thank you to our community and team for making it possible!
#LGSFoundation
🎉 HUGE news: the National Plan for Epilepsy Act (S. 494) just passed the U.S. Senate. Unanimously.
Next stop: the House. The work isn't done, but today we celebrate with our LGS families whose voices made this possible. 💜
#EpilepsyAwareness #LGS
💜 Conference Sessions & Photos Are Here!
Watch presentations from leading clinicians, researchers, advocates, and the LGS community, or relive your favorite moments through our photo gallery.
🎥 youtube.com/playlist?list=PL…
📸 flic.kr/s/aHBqjCZQHp
#LGSConference #LGSFoundation
What stays with us after a conference isn't just what's written in our notebooks. It's the connections and moments that remind us why this work matters.
Read a reflection on this year's LGS Conference by our Research Director, Helen Chen. 💜
lgsfoundation.org/full-heart…
That means the more families who participate, the more insights the whole community benefits from. This registry is built by us, for us. 💜
👉 Learn more and register: lgsfoundation.org/lgs-regist….
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#LGSFoundation #LennoxGastautSyndrome #LGS #RareDisease
LGS Foundation retweeted
@n_lorem develops two separate antisense oligonucleotide targeting toxic @SCN2A mutations to achieve meaningful improved lives in #epilepsy. at @RadyGenomics @RushMedical. nature.com/articles/s41591-0…. @EpilepsyFdn @LGS_Foundation.
LGS Foundation retweeted
Our team attended the 10th International Family & Professional Conference, hosted by the @LGS_Foundation.
Supporting their work helps strengthen understanding, connection and care across the LGS community.
Learn more: lgsfoundation.org/lgs-confer…
LGS Foundation retweeted
It was awesome co-leading the @LGS_Foundation workshop "Building Your #LGS Care Team and Care Plan" along with my colleague and friend, Dr. Cynthia Keator. @CookChildrens @TheNotoriousEEG
The LGS-CORE Study brings our community together to collect data that drives real research forward.
Enroll today 👉 lgs-core.iamrare.org 💜
#LGS #LennoxGastautSyndrome #RareDisease #PatientRegistry
Last week, our President & CEO, Tracy Dixon-Salazar, presented and moderated a session on the pipeline for gene-based and cell therapies, showing up not only as a scientist and advocate but also as a lived-experience expert at the Epilepsy Foundation Pipeline Conference 💜
Bringing together industry, researchers, clinicians, and advocates to advance research and accelerate new therapies.
🌟 Members get early access to research tools, strategic networking, and more.
🔗 lgsfoundation.org/lgs-resear…
🙏Thank you to the partners who have already joined!
LGS Foundation retweeted
Amazing talk by @julietkknowles @StanfordMed on pediatric epilepsy at 2026 @McKnightFdn Neuroscience mtg. On myelin plasticity in epilepsy. Honors Savanna’s journey and mom Tracy Dixon Salazar, PhD CEO of @LGS_Foundation.
There is no cost to patients or families to participate, and you won't be asked for payment at any point.
Your only investment is your story, and that story has the power to change the future of LGS care. 💜
👉 Learn more and register: lgsfoundation.org/lgs-regist…
🚨 Almost sold out 🚨
Only 10 spots remain for the 10th International Family & Professional Conference!
Join families, caregivers, professionals, and advocates for three days of learning, connection, and community.
📍 Orlando, FL
📅 July 9–11, 2026
🔗 bit.ly/conference2026-regist…
LGS Foundation retweeted
🧠 First postmortem evidence of neurodegeneration & glymphatic failure in adult #DravetSyndrome.
DS is more than a developmental epileptic encephalopathy.
Aging in #SCN1A-DS needs urgent attention
Profound gratitude to the donor family. 💜
doi.org/10.1111/epi.18613
@GGKovacsBrain
