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LGS Patient Navigator & Family Ambassador Program

The Lennox-Gastaut Syndrome (LGS) Foundation is firmly grounded in the belief that everyone who is impacted by LGS should have access to the information, resources, and support they deserve, including a connection with others. Our Patient Navigator & Family Ambassador Program is a dedicated group of empowered and caring volunteers whose primary focus is to ensure no one feels alone on this LGS journey.

We are so grateful for those who volunteer themselves in support of others with LGS. To support those who support others, the LGS Foundation hosted a special meeting on August 13-14, 2022. At this meeting, members of the Patient Navigator & Family Ambassador team gathered for a weekend of robust discussion, sharing, and learning. The topics centered around relational, emotional, and practical connections with others. A critical part of our discussion was how important it is to care for yourself along this journey. Together, we are all committed to building a stronger LGS Community through family support

Family Ambassadors are regional experts on LGS and provide one-on-one support and mentorship, including resource sharing with other LGS families. Patient Navigators are available to guide and support a person through specific topics such as brain surgery, getting a service dog, palliative care, and government programs or services. 

If you feel you need some support and assistance, connecting is easy.


Raise Awareness with us this November!!

Every year throughout the month of November, the LGS Foundation & LGS Community come together to celebrate and raise awareness of Lennox-Gatsaut Syndrome. This year, in addition to our annual social awareness movement, the Foundation will host two in-person awareness events. We hope you'll join us, whether it be in person or virtually! 

October 31, 2022

Halloween Masquerade Ball at Epilepsy Awareness Day at Disneyland to Raise Awareness of LGS

November 1, 2022

International LGS Awareness Day: A Day to Raise LGS Awareness Worldwide & to Illuminate Your Home for LGS


November 5, 2022

Every Moment Matters Awareness Dinner Event at the Birch Aquarium in San Diego, California


We are Celebrating our 2022 Leaders in LGS

Leaders in LGS are individuals or organizations who shine brightly through inspiration, outstanding dedication, and commitment to the Vision and Mission of the LGS Foundation. 

These Leaders have not only significantly impacted the LGS Foundation, but have also had an unprecedented positive influence on the LGS Community as a whole.

Congratulations to our exceptional 2022 Leaders. We couldn't achieve our mission without you!


LGS Research Roundtable

Join us on Friday, December 2, 2022, to learn about how we are working to advance clinical research in LGS as we prepare for the upcoming 2023 LGS Meeting of the Minds on Advancing LGS Clinical Research.

If you're near Nashville, Tennessee and would like to attend in person, please reserve your seat today, as seats are limited and filling up fast!


LGS Foundation Resource Highlights


Caregiver of Adults with LGS Support Group

Caring for an adult with LGS can be every bit as demanding as caring for a child with LGS, and the need for support is great. We invite parents and caregivers of adults with LGS to join us for discussion and support as together we face the ever-changing challenges associated with LGS.  


VIP Sibling & Caregiver Kits 

LGS impacts everyone in the family. 
VIP Sib Kits inspire creativity in children without epilepsy, letting them process through drawing and writing. It also provides ideas, educational resources, and support for parents and other caregivers.

Find out more about these tools at www.lgsfoundation.org/celebrating-our-rockin-lgs-siblings



Give with confidence!

The LGS Foundation earned the Platinum Seal of Transparency - the highest possible rating - from Candid (formerly GuideStar).


Lennox-Gastaut Syndrome (LGS) Foundation
6030 Santo Road, Suite 1 Unit 420878 | San Diego, California 92142


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