LGS Foundation

The LGS Foundation is dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.

[AGE Program - Adult Genetic Epilespy @DrDaniAndrade]

🧠 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. 💜
https://t.co/GnOUYX3VG3
@GGKovacsBrain

[LGS Foundation @LGS_Foundation]

The data collected includes, but is not limited to:

✅ Socio-demographics
✅ Medical and diagnostics
✅ Treatment and disease progression
✅ Management of care
✅ Quality of life

🔗 https://t.co/iOrhRhcfNZ

[LGS Foundation @LGS_Foundation]

Meet our Grantees: Drs. Daniel Shrey, Beth Lopour &  Mary Zupanc 🔬

Early, accurate diagnosis can change everything for a person with Lennox-Gastaut Syndrome (LGS), and that's exactly what this research team is working on.

👉🏼 Learn more: https://t.co/xfxkOOGkxp

[LGS Foundation @LGS_Foundation]

📅 July 9-11, 2026
📍Caribe Royale Orlando, FL

https://t.co/CFJcBN0eIF

Thank you to UCB, Neurelis, GeneDx, Jazz Pharmaceuticals, SK Life Science, and Lundbeck for making this event a reality! Your support strengthens our community and brings us all together. 🌟

[LGS Foundation @LGS_Foundation]

Your data helps scientists and researchers uncover trends in causes, diagnosis, and new directions in therapies and treatments… discoveries that could shape the future of LGS care for generations to come. 💜

👉 Learn more and register: https://t.co/jstoYlgupE

[Fábio Nascimento @fabnascimen]

Transitioning young adults with #epilepsy to adult care can be challenging, esp in a fee-for-service healthcare system. This @NeurologyCP narrative review outlines the real barriers & discusses practical strategies to overcome them.

https://t.co/Q9IBMtoZBE

[Rare & Ready Coalition @rare_ready]

May is #MentalHealthMonth! Coalition member @LGS_Foundation has great resources...
➡️https://t.co/hI7Yvt9Rdo

[LGS Foundation @LGS_Foundation]

📅 July 9-11, 2026
📍 Caribe Royale Orlando, FL

🔗 https://t.co/CFJcBMZGT7

🌟 Thank you to UCB, Neurelis, GeneDx, Jazz Pharmaceuticals, SK Life Science, and Lundbeck for making this event a reality! Your support strengthens our community and brings us all together.

[The Mark Shaparin Foundation @markshaparinfdn]

The American Academy of Neurology is updating their Sudden Unexpected Death in Epilepsy (SUDEP) Practice Guidelines.

Please join us in commenting during the open public comment period until May 12, 2026.

https://t.co/TyQgGPZpgO

The Mark Shaparin Foundation is committed to #EndTheSUDEPsecret and ensure that all neurologists and epileptologists #TalkAboutSUDEPeveryVisit

Learn more and support our life saving work at
https://t.co/QrmnwZODOe

#SUDEP
#SUDEPAwareness
#markshouldstillbehere

@AANmember
@AmEpilepsySoc
@ChildNeuroSoc
@Child_Neurology
@EpilepsyFdn
@AmericaEpilepsy
@LGS_Foundation
@curedravet
@CureEpilepsy
@SudepAction

[Iridium Continuing Education @IridiumContEd]

We’re proud to announce our first publication exploring a tethered education model in care.

The article highlights how integrating patient & caregiver voices into provider education can drive meaningful practice change.

📊 87% of participating HCPs committed to practice changes impacting 225+ patients weekly.

Read the publication:
🔗 https://t.co/xpU3m3NEvo

Thank you to @LGS_Foundation, our accredited partner @PACE_cpd, faculty, caregivers, collaborators, and learners.

#CME #MedicalEducation #LGS #Epilepsy #PatientCenteredCare

[LGS Foundation @LGS_Foundation]

Taking care of yourself is not selfish. It’s necessary.

The LGS Foundation has caregiver support resources, support groups, and community connections designed specifically for families navigating LGS.

Find them here: https://t.co/zkivuiZDRQ

[LGS Foundation @LGS_Foundation]

The LGS Foundation attended the #NORDSymposium and the message was clear: patient registries are the foundation of rare disease drug development.

That's why LGS-CORE matters: caregivers' lived experience IS data. It drives endpoints, real-world evidence, and trial readiness.

[LGS Foundation @LGS_Foundation]

This year, at the 10th International Family & Professional Conference, we’re introducing something new and truly special: Camp Small Steps.

📅 July 9-11, 2026
📍 Caribe Royale Orlando, FL

https://t.co/egreGkp1Gg

🌟A big thank you to @UCBUSA for making this event a reality!

[LGS Foundation @LGS_Foundation]

The Cure LGS 365 Research Grant funds basic, translational, and clinical research on LGS year-round.

Priority areas include biomarkers, disease-modifying therapies, neurodegeneration, natural history, quality of life, and more.

🔗 Apply today! https://t.co/pe0FsGiqhu

[Fábio Nascimento @fabnascimen]

• We developed an adult-based #epilepsy #transition program in the US.
• Successes included educational and clinical opportunities with revenue potential.
• Challenges included resource/infrastructure limitations and structural barriers.

@wfneurology

https://t.co/OpKjerkbEx

[LGS Foundation @LGS_Foundation]

A message from Tracy Dixon-Salazar, President & CEO of the LGS Foundation.

🔗 Learn more about how we are tackling the Three Grand Challenges in LGS: https://t.co/dLiBcQfzRc

#LGS #PoweringBreakthroughs #LennoxGastautSyndrome #RareDisease #WalkForLGSResearch

[LGS Foundation @LGS_Foundation]

🎉 Big news! The LGS Foundation is now on TikTok and BlueSky!

🎶 TikTok: https://t.co/NXUE0x1biW
🦋 Bluesky: https://t.co/n2wkK5Xts5

See you there!

#LGS #LennoxGastautSyndrome #RareDisease #LGSFoundation #FollowUs

[LGS Foundation @LGS_Foundation]

Stories like his are exactly why the LGS Foundation is tackling the 3 Grand Challenges in LGS:
1️⃣ Precision diagnosis
2️⃣ Precision treatments
3️⃣ Whole-life care

💜 Together, we move from seizures to full lives.

https://t.co/QuUPXIhAzu

[Tracy Dixon-Salazar @TracyDixonSalaz]

My daughter Savannah was kind. She made people laugh. She loved hard, every day.
We lost her to Lennox-Gastaut Syndrome in 2025.
The world needs more of what she was. Not less. More.
I’m asking you to do something with me. It’s called Savannah’s Dandelions.

[LGS Foundation @LGS_Foundation]

#SavannahsDandelions

[Tracy Dixon-Salazar @TracyDixonSalaz]

🌼 Savannah's Dandelions

Join us!

Here's how it works:

🌱 Find a dandelion that's gone to seed (or a picture of one). Hold it for a second.

💛 Decide one thing you'll do today to make someone's life better - help a neighbor, call someone, show up for a friend.