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.