Our Approach

In everything we do, we believe every child and adult deserves a chance to live life to the fullest.

Our Why

The status quo is that young children with LGS and pre-LGS are having their lives robbed from them, and adults with LGS are living with the burden of unrelenting seizures and side effects. Regardless of whether you are a caregiver of a young child with LGS or an adult battling LGS, the burden of navigating the LGS maze falls to caregivers and this burden is too great for them alone to bear. 

We challenge this status quo! We are harnessing the power of the patient family community to ensure that research, care, support services, education, and awareness of LGS are relevant for those living with LGS and their loved ones. 

We seek meaningful and impactful interventions that are designed to end the suffering caused by LGS.

The hope is that we will lessen the burden of LGS on younger generations.

If we are successful, the science we accelerate to find the cures for this catastrophic epilepsy disorder of early life will usher in cures for other circuits and aging disorders of the brain. 


Our Vision

To end the suffering and devastation caused by LGS. 


Our Mission

The LGS Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support. 


Our Pillars

To accomplish our mission we must:

  • Support, empower, and educate our community
  • Accelerate research
  • Raise awareness and build community
  • Build and strengthen our organization 

Our Theory of Change

If we create meaningful and impactful, patient-driven programs guided by our pillars we will improve the lives of those impacted by LGS.


Our Strategic Plan

The purpose of this 3-year strategic plan is to articulate the long‐range direction and priorities for the LGS Foundation. The content for our strategic plan was derived by examining the LGS landscape. We listened to a broad range of input from key stakeholders within our community regarding current community priorities, emerging needs, and organizational strengths and vulnerabilities.

The objectives and strategies described in this plan have been reviewed and approved by our Board of Directors, with input from our Medical Science Advisory Board. These strategies will guide our efforts and investments and will balance our current and future needs. View our Strategic Plan.


Our Transparency

Tax-Exempt Public Charity 501(c)(3)Status

  • LGS Foundation was founded with the purpose of creating a community of support for families living with LGS and improving the lives of those with LGS. It was established in the state of New York and was designated a tax-exempt public charity in the United States in October 2009 by the Internal Revenue Service under Section 501(c)(3).

Financial Transparency

Audited Financials Statements not required 2008-2019

Donation Guidelines

  • In addition to our internal financial management controls to assure ethical leadership, LGS Foundation has established a donation policy for pharmaceutical companies, sponsors, and private donors. These guidelines serve as guidance for our board members, staff, and volunteers to guarantee there is no real or perceived bias.
      • View our Donation and Sponsorship Guidelines (Coming Soon)

Corporate Relations & Interacting with the FDA

Donor Confidence

  • LGS Foundation is proud to be a Platinum Level Participant on the GuideStar Exchange, demonstrating our commitment to financial transparency. It is the goal of the LGS Foundation that donors have the highest level of confidence when making contributions to the foundation. It is our intention to provide you with that confidence by being transparent in all we do.
  • If you have any questions or concerns, please don’t hesitate to email our Executive Director or our general email, info@lgsfoundation.org

Our Community Participation Guidelines

  • Throughout our work, the LGS Foundation is part of, supports, and directly works with many different communities. Within those communities, the LGS Foundation is committed to creating and maintaining an environment where everyone is welcomed, respected, and supported. We want our families, collaborators, employees, contractors, grantees, and partners to have an opportunity to participate and contribute, and to be valued for their skills, experience, and unique perspectives.
  • The behaviors and practices in these guidelines reflect our LGS Foundation values as well as our Diversity, Equity, and Inclusion (DEI) principles — including a commitment to fostering truly inclusive work. As such, we hold ourselves accountable to these Community Participation Guidelines and expect all those who participate in the LGS Foundation communities to do the same – whether participating in an internal meeting, convening, workshop, online discussion, or other forum.
It’s time to end the devastation caused by LGS. Join us!

Updated April 10, 2022