Events & News


Shining Epilepsy Star: Lennox Gastaut Syndrome Foundation: Christina SanInocencio

What led you to create the LGS foundation?
I am the sibling of a young man who has been living with LGS for over 20 years. I have long understood how devastating LGS can be – and how LGS affects the whole family.

Tell us about the LGS Foundation?
The LGS Foundation is a nonprofit organization that provides information about LGS and raises funds for research and programs.

How and when was the foundation created?
In 2007, I began pre-production for a documentary on LGS to help raise awareness (my professional background is in television production). While writing the script, I saw how few resources there were, and recalled how alone and misguided our family often felt. I switched gears and turned my attention to starting an organization for LGS.

How many members does the foundation now have and where do they come from?
Just under 3,000 members in almost 40 countries.

What are the foundation’s proudest accomplishments?
The growth of the foundation has been astounding. The organization began as a network of just a few LGS families across the United States looking for support. Today, we are able to provide that support through regional support groups in over a dozen U.S. cities and through our annual Family & Caregiver Conference on LGS. And, we are funding some exciting research projects in 2012.

What services does the LGS foundation offer and how can they be accessed?
1. Information and Educational Materials in English and Spanish: These can be accessed on our main website: Our other website is on adults living with Lennox-Gastaut Syndrome:
2. Community Forum
3. Art Therapy Program: We provide a custom art therapy workbook and supplies to members (free of charge). Go to:
4. Mentor Program: aims to train caregivers how to teach others about LGS. 
5. Regional Support Groups
6. National Caregiver Conference

How do you manage to hold so many support groups all over the country?
Not very easy! :) Typically, we pinpoint areas with high populations of LGS patients and then select a location (for example, a community center). We then have a rep from the foundation or a local volunteer travel to the meeting to run it. 

What is your advice for someone who has a loved one newly diagnosed with LGS?
First and foremost –make sure they are communicating effectively with their neurologist! If you are not receiving adequate services, don’t be afraid to speak up, ask questions or seek another opinion. And, seek support from other parents.

What is important for caretakers of children with LGS to know?
It’s important for caregivers to understand that there are others out there who share very similar experiences and to be kept up to date on different treatment options for LGS.

What are your plans and hopes for the future of the LGS foundation?
We are working on: 1) a caregiver’s guide to LGS currently, which will list resources on a state and federal level, 2) launching a series of webinars on LGS this year, 3) expanding our support groups and regional meetings to new cities, 4) holding our next National Conference in April/May of 2013 on the West Coast, and 5) funding research. 


Do you have an epilepsy star that you would like to nominate?
Please tell us about your star: what has she/he been up to?  How have they been contributing to the epilepsy community, educating the general public, helping others?  Send the nomination to

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