LGS Foundation

LGS Foundation Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from LGS Foundation, Nonprofit Organization, 6030 Santo Road, Suite 1, Unit 420878, San Diego, CA.

Nonprofit organization dedicated to improving the lives of individuals impacted by Lennox-Gastaut Syndrome (LGS) through advancing research, awareness, education, and family support. The LGS Foundation is a nonprofit organization dedicated to improving the lives of individuals living with Lennox-Gastaut Syndrome, a rare and severe form of epilepsy, through research, programs, and education.

08/29/2026

August may be coming to a close, but it's never too late to create a plan that protects the people you love.

For families living with Lennox-Gastaut Syndrome, planning ahead can bring greater clarity and peace of mind. Whether you're creating your first will or updating an existing one, taking that first step today can make a lasting difference tomorrow.

We've gathered free resources in one place to help you take the next step, including:

✅ A free online tool to create your will in about 20 minutes
✅ Information on how to take legal action that grants an adult legal authority to make decisions for another person
✅ A directory of attorneys for special needs planning
✅ Future planning guides and a free letter of intent template

And if, as part of your plans, you choose to include the LGS Foundation in your will, your legacy can help create a brighter future for generations of families affected by LGS through initiatives like Powering Breakthroughs. It's entirely optional, but deeply appreciated.

🔗 Learn more about planning for the future and explore resources available: lgsfoundation.org/planning-for-your-loved-ones-future

Phase 1 vs. Phase 2 - What's the Difference?We've been hearing a lot of questions like: "I already signed up, do I need ...
08/28/2026

Phase 1 vs. Phase 2 - What's the Difference?

We've been hearing a lot of questions like: "I already signed up, do I need to do this too?" or "Which one should I join?" Let's clear it up! 💜

The LGS Learn From Every Patient Database brings together important opportunities for our community. Here's a simple breakdown:

1️⃣ Phase 1: Own Your Medical Records
Phase 1 is about bringing your loved one's medical records together in one secure place, giving you full control over what de-identified information you choose to share with researchers. Think of it as building your foundation.

2️⃣ Phase 2: LGS-CORE Study (The Registry)
Phase 2 takes things further. De-identified information is shared back with the entire LGS community and used by researchers and scientists to uncover trends in causes, diagnosis, and new directions in therapies and treatments. By participating, you and your family become part of the research team itself.

✅ Already in Phase 1? You are absolutely welcome, and encouraged, to join Phase 2 as well! Think of it as a natural next step in your journey.

🆕 Never participated before? Phase 2 is also open to brand new participants! If you know other LGS families who haven't been involved yet, this is a wonderful opportunity to invite them in. The more families who participate, the more powerful the research becomes.💜

🔗 Enroll in the study to drive research forward today: lgs-core.iamrare.org

Planning for Families Living with LGS 💜For families affected by Lennox-Gastaut Syndrome, planning for the future is some...
08/25/2026

Planning for Families Living with LGS 💜

For families affected by Lennox-Gastaut Syndrome, planning for the future is something many think about every day.

From lifelong care needs to creating strong support systems, preparing ahead can help bring greater confidence and peace of mind.

At the LGS Foundation, we are committed to creating a future where individuals living with LGS have access to the resources, treatments, and care they need throughout every stage of life.

Planning today can help build a stronger tomorrow.

🔗 Learn more about planning for the future and explore resources available: lgsfoundation.org/planning-for-your-loved-ones-future/

08/22/2026

📋 Have you joined Phase 2 - LGS-CORE Study of the Learn From Every Patient Database?

Whether you haven’t signed up yet or got stuck along the way, this is for you!

The LGS-CORE Study User Guide is here to make the process simple from start to finish:

✅ How to register for the study
✅ How to consent to participate
✅ How to complete surveys
✅ How to set up your IAMRARE platform account

The guide walks you through every step so you know exactly what to expect.

⏱️ Remember: Signing up only takes about 15 minutes, and you can complete all surveys at your own pace. This means you can return to your session any day without losing your progress. It’s completely free!

👉 Access the User Guide via the “More Resources” link in our Bio or at: https://lgs-core.iamrare.org/about/user-guide/

🔗If you are ready, enroll in the study to drive research forward today: lgs-core.iamrare.org

Every person who joins the registry brings us one step closer to better understanding LGS and related conditions. Your story matters. 💜

If you have any questions, reach out to [email protected]

From a small seed of research to a major breakthrough!We are thrilled to share how an LGS Foundation "seeding grant" has...
08/21/2026

From a small seed of research to a major breakthrough!

We are thrilled to share how an LGS Foundation "seeding grant" has blossomed into a major new collaboration between the Focused Ultrasound Foundation and CURE Epilepsy.

This research into non-invasive sound wave technology is a game-changer for LGS, moving us closer than ever to precision treatments that don’t require invasive surgery.

This progress is a direct result of our investment in early-stage science and our commitment to the 3 Grand Challenges in LGS.

🔗 Read the full story of how we’re turning hope into clinical reality here: https://www.lgsfoundation.org/research-soltesz-grant/

Think you don’t need a will? Think again. 📝❌ Myth: “A will is only for people with significant assets.”✅ Fact: A will is...
08/19/2026

Think you don’t need a will? Think again. 📝

❌ Myth: “A will is only for people with significant assets.”
✅ Fact: A will is for anyone who wants to make their wishes clear and help protect the people and causes they care about.

No matter where you are in life, creating a plan for the future is a meaningful step toward providing clarity and support for those you love.

This National Make-A-Will Month, take time to learn why planning ahead matters.

🔗 Learn more about planning for the future and explore resources available: lgsfoundation.org/planning-for-your-loved-ones-future/

📅 Join PAME: Partners Against Mortality in Epilepsy on September 17th for an important discussion on Seizure Clusters: D...
08/18/2026

📅 Join PAME: Partners Against Mortality in Epilepsy on September 17th for an important discussion on Seizure Clusters: Definitions, Consequences, Interventions.

Cluster seizures are generally understood as a pattern of seizures occurring more frequently than is typical for an individual, but definitions—and the interventions that follow—can vary significantly. Understanding seizure clusters is critical for advancing treatment options, improving patient care, and exploring their relationship to SUDEP risk.

🕐 September 17, 2026 at 1:00 PM – 2:00 PM EST

Hear from leading experts in epilepsy care and research:

• Sheryl Haut, MD – Professor of Neurology and Director of Adult Epilepsy, Montefiore-Einstein
• Laura McGarry, MD, PhD – Division of Neurology, Children's Hospital of Philadelphia
• Lawrence J. Hirsch, MD – Professor of Neurology, Yale University

This educational webinar will explore current definitions of seizure clusters, their clinical consequences, and emerging approaches to intervention. Register here: https://us02web.zoom.us/webinar/register/WN_mAyfgr7rQCSZ_m13ooidPA #/

Sponsored by Neurelis

Finding the right care for LGS can feel overwhelming. 💜If you’re looking for a healthcare professional with experience t...
08/13/2026

Finding the right care for LGS can feel overwhelming. 💜

If you’re looking for a healthcare professional with experience treating Lennox-Gastaut Syndrome (LGS), the LGS Foundation’s Find a Doctor directory can help.

The directory features providers who have treated people with LGS and related epilepsies and have been recommended by families in the LGS community. You can search by location and find pediatric and adult providers.

The LGS Foundation strongly recommends working with an epileptologist, a neurologist with advanced training in epilepsy, for the specialized care LGS often requires.

🔎 Explore the directory and find care near you:
https://www.lgsfoundation.org/find-a-doctor/

Know a doctor who understands LGS? You can also recommend a physician to help other families find knowledgeable care.

National Make-A-Will Month Awareness 📝August is National Make-A-Will Month, a reminder that planning for the future is a...
08/11/2026

National Make-A-Will Month Awareness 📝

August is National Make-A-Will Month, a reminder that planning for the future is an important act of care.

A will helps protect the people you love, ensures your wishes are known, and gives your family greater clarity when it matters most.

Creating a plan for the future does not have to feel overwhelming. Taking one step today can provide peace of mind for tomorrow.

Learn more about why having a will matters and how planning ahead can help you and your loved ones: lgsfoundation.org/planning-for-your-loved-ones-future/

🎉 Today, the LGS Foundation turns 18! 💜Eighteen years ago, a small group of determined families came together with one s...
08/08/2026

🎉 Today, the LGS Foundation turns 18! 💜

Eighteen years ago, a small group of determined families came together with one shared belief: no one facing Lennox-Gastaut Syndrome (LGS) should have to do it alone.

Since then, we've grown into a global community advancing research, connecting families, educating healthcare professionals, advocating for better care, and working every day toward a brighter future for everyone impacted by LGS.

This milestone belongs to all of you. 💜

To every family who trusted us.
To every donor who believed in our mission.
To every clinician, researcher, volunteer, partner, advocate, and supporter who has walked alongside us.

Thank you for helping us reach 18 years of hope, progress, and community.

And to our incredible team, thank you for bringing this mission to life every single day. Your dedication, compassion, and hard work have made every milestone possible, and we're so grateful for all you do.

Happy 18th anniversary! Here's to the next chapter, and to everything we'll accomplish together. 💜

Address

6030 Santo Road, Suite 1, Unit 420878
San Diego, CA
92124

Telephone

+17183743800

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