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Looking Back and Looking Ahead in 2022

Wow! It is so hard to believe we are over halfway through 2022 already! Together, we have accomplished so much.   Individually we can cause ripples that expand outward and touch those around us. Those ripples, and the LGS community’s collective focus, are how we can move mountains together!

We kicked off 2022 with our Elevate Patient Assistance Program, a program dedicated to assisting families living with LGS to obtain critical medical equipment that would otherwise be denied. In addition to providing durable medical equipment, the love and kindness in our amazing LGS community allowed us to award a wheelchair-accessible vehicle to a family with no transportation, giving them the independence they need to go to and from their child's many medical appointments. 

We have also made it easier for families to get connected. A New Family Welcome Kit, combined with a personal welcome, bridges the gap between walking the LGS journey alone or walking alongside others who understand and care. Living with LGS can be a rollercoaster of emotions, and the decisions we make are tough; our families have each other!  In our Patient Navigator and Family Ambassador program, volunteers are always standing by, ready to listen, walk the journey with you, and introduce you to resources that will make a difference.

Seeing everyone in person and learning more about LGS at our recent International Family & Professional Conference in Texas has left us all energized and ready for the rest of 2022. There is nothing like the feeling of coming together in person and finding a place where we belong. Thank you to everyone who attended and made this event possible!

Looking ahead, the second half of 2022 is filled with wonderful events. Our first ever Swing FORE A Cure Golf Outing is coming up soon. This one-day event will be packed with fun and competition, and all funds raised support our search for the cures for LGS. In November, International LGS Awareness Day events will kick off Epilepsy Awareness Month and activities include a Dance Party at Disneyland, Illuminate for LGS, and our Every Moment Matters Dinner at the Birch Aquarium.

Be on the lookout for more info about these exciting events and thank you for being a part of our incredible community of support!


Kathy Leavens

Director of Programs
Mom to Matthew, who passed away from LGS


Mark Your Calendars and Save the Date for Epilepsy Awareness Month

One month, one mission… to raise awareness for the more than one million children and adults worldwide living with Lennox-Gastaut Syndrome!

Join our community from October 31st through November 30th as we aim to raise awareness and understanding of LGS and the importance of LGS research to find the cures.

LGS Foundation Epilepsy Awareness Month Events

  • October 31st - LGS Halloween Masquerade Ball @ Epilepsy Day at Disneyland, CA 
  • November 1st - International LGS Awareness Day & Illuminate for LGS 
  • November 5th - Every Moment Matters Dinner Event @ Birch Aquarium, CA 
  • The Entire Month of November - Epilepsy Awareness Month 

LGS Research Roundtable at AES

Advancing Clinical Research In LGS: Starting The Conversation

Friday, December 2, 2022 | 11:00am ET

Every year, the LGS Foundation organizes the LGS Research Roundtable at the American Epilepsy Society's (AES) annual meeting in an effort to #FreeTheData. Join us 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.


Elevate LGS Patient Assistance Program

Did you know that the LGS Foundation provides financial assistance to those impacted by Lennox-Gastaut Syndrome? 

The LGS Foundation’s Elevate Patient Assistance Program provides assistance to individuals to help pay for durable medical equipment not typically covered through insurance or other programs.


Upcoming LGS Support Groups

Looking for support for LGS? Get the emotional support you need from others in similar circumstances, and gain practical advice and insights on managing life with LGS.

Join us at one of our upcoming online LGS Support Groups. To join a group, you must be a caregiver and a member of our private, online, LGS Facebook community.


Clinical Trial Updates: The PACIFIC Study 

The PACIFIC Study is a clinical study evaluating adult participants with DEE. The primary objectives of the study are to assess the safety & tolerability of an investigational study drug. The PACIFIC study is also designed to examine a change in seizure frequency over the 90-day treatment period. Click the link below to learn more about this study. Learn more about clinical trials in LGS here


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


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