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.
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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.

06/04/2026

✨ Camp Small Steps is for the whole family!

A space to connect, unwind, and just be together.

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

Designed especially for LGS families, this experience offers a sensory-aware, welcoming environment with gentle activities, creative play, and space to relax side by side. It’s not about doing everything, it’s about being together, at your own pace, one small step at a time.

And that’s just one part of what makes this conference so meaningful. From education to connection, you’ll be surrounded by a community that understands your journey.

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

🚨 The conference is filling up fast!
If you’re planning to attend, now is the time to register and book your room before spots are gone.

🔗 Register here: bit.ly/conference2026-registerhere

🙋🏻‍♀️ Want to learn more before registering? Please visit: lgsfoundation.org/lgs-conference

See you in Orlando! ☀️

🌟 A big thank you to UCB USA for making this event a reality! Your support strengthens our community and brings us all together.

📅 Mark Your Calendars and Join Us!💜 June 09 @ 8:00 pm - 9:00 pm ETLGS: Standing Together. Stronger Together. Support Gro...
06/01/2026

📅 Mark Your Calendars and Join Us!

💜 June 09 @ 8:00 pm - 9:00 pm ET
LGS: Standing Together. Stronger Together. Support Group

💜 June 16 @ 8:00 pm - 9:00 pm ET
Dad to Dad Support Group

💜 June 18 @ 8:00 pm - 9:00 pm ET
LGS Grupo de Esperanza Support Group

💜 June 22 @ 8:00 pm - 9:00 pm ET
Caregiver of Adults with LGS Support Group

These monthly support groups are available to LGS Families who are members of the LGS Foundation Caregiver Support Community.

To join our online community and for login information, please visit our group at Lennox-Gastaut Syndrome (LGS) Foundation Caregiver Support Community.

🔗 www.facebook.com/groups/lgsfoundation

The data collected includes, but is not limited to:✅ Socio-demographics✅ Medical and diagnostics✅ Treatment and disease ...
05/29/2026

The data collected includes, but is not limited to:

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

Data is collected through a secure web-based application (that can be accessed by computer, tablet or phone) developed by the National Organization for Rare Disorders, Inc. (NORD®). Study participants respond to questions grouped within a series of surveys developed per study standards and in collaboration with disease-specific experts.

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

Meet our Grantees: Drs. Daniel Shrey, Beth Lopour & Mary Zupanc 🔬Early, accurate diagnosis can change everything for a ...
05/28/2026

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.

With support from our Cure LGS 365 Research Grant program, this team developed a new method to assess EEG (Electroencephalogram) with improved accuracy and sensitivity, and identified markers that can predict when a child is transitioning from infantile epileptic spasms syndrome to LGS. The earlier we can catch it, the sooner families can access the interventions that matter most.

Beyond the science, this grant helped to train the next generation of LGS researchers. Dr. Derek Hu, who trained under Dr. Shrey's supervision, is now continuing his research in LGS as a professor at California State University, Long Beach.

Together we can make a real difference!

👉🏼 Learn more:https://www.lgsfoundation.org/wp-content/uploads/2026/04/Shrey-Grant-PLS.pdf

You are not alone.The LGS Foundation has caregiver support resources, support groups, and community connections designed...
05/22/2026

You are not alone.

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

You are seen. You are valued. And you deserve support too. 💜

Find Caregiver Resources here: https://www.lgsfoundation.org/caring-for-the-caregiver/

05/19/2026

We love when our community gets to hear directly from the people who pour their hearts into this foundation.

In this reel, Fred Roedl, Chair of the Board of Directors of the LGS Foundation, shares why attending the 2026 International Family & Professional Conference in Orlando is so important for the LGS community.

Because this conference isn't just an event. It's a place where families who understand each other finally get to be in the same room. Where you can ask the questions you've been holding onto, hear from the experts leading the charge on LGS research, and spend a weekend surrounded by people who truly get it.

✨ Register today and be part of something powerful: bit.ly/conference2026-registerhere

🙋🏻‍♀️ Want to learn more before registering? Please visit: lgsfoundation.org/lgs-conference

See you in Orlando! ☀️

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

💡 Did you know that by joining the LGS-CORE Study, you and your family become part of the research team itself?Your data...
05/15/2026

💡 Did you know that by joining the LGS-CORE Study, you and your family become part of the research team itself?

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://www.lgsfoundation.org/lgs-registry/

💜 Care for the CaregiverAfter a loved one’s LGS diagnosis, it's important for caregivers to talk about their feelings an...
05/14/2026

💜 Care for the Caregiver

After a loved one’s LGS diagnosis, it's important for caregivers to talk about their feelings and emotions with trusted people. They can be supported by family, friends, professionals, or other caregivers in the same situation. Managing your loved one’s daily care is demanding and can affect your relationships with your partner, other family members, and friends.

You do not have to carry this alone.

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

You are seen. You are valued. And you deserve support, too. 💜

Find Caregiver Resources: https://www.lgsfoundation.org/caring-for-the-caregiver/

Address

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

Telephone

+17183743800

Website

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