Our Approach

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! Here, 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 to design meaningful and impactful interventions that will end the suffering caused by LGS.

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

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 circuit and aging disorders of the brain. 

Our Pillars

To accomplish the mission, we must:

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

Our Theory of Change

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

Our Strategic Plan

The purpose of this 4-year strategic plan is to articulate the long‐range direction and priorities for the LGS Foundation. We derived the content for our strategic plan by examining the LGS landscape. We gathered input from key community stakeholders on current 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 Council. These strategies will guide our efforts and investments and will balance our current and future needs. View our Strategic Plan.

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

• In all relations with external organizations, LGS Foundation will act in ways that enhance our credibility and professional recognition. In order to ensure that all corporate donations are in alignment with our mission and are for the benefit of the LGS community, LGS Foundation follows the following guidelines and principles.
  • • View our Corporate Relations Policy
    • View our Policy on Organizational Participation in FDA Hearings & Meetings

Donor Confidence

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 that welcomes, respects, and supports everyone. We want families, collaborators, employees, and partners to participate, contribute, and feel valued for their skills and perspectives.
• The behaviors and practices in these guidelines reflect the LGS Foundation’s values as well as the 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.
  • • View our Community Participation Guidelines