Join the LGS Community Center
The LGS Community Center is open to individuals interested in supporting families impacted by LGS and staying up to date on important events, research, and opportunities to get involved.
Additionally, this private forum offers four private support groups with monthly opportunities to connect with other parents and caregivers of loved ones with Lennox-Gastaut Syndrome (LGS).
Learn more about our LGS Community Center networks and how to join below.
LGS Collaborative Research Network
The LGS Foundation is bridging the gap between patient families and researchers to drive LGS research to new heights. Whether you are a researcher or patient family expert, this network is for you. With our LGS Collaborative Research Network, we push the conversation about research beyond only treating the symptoms of seizures but also finding treatments that target the whole syndrome. Together we are actively seeking disease-modifying therapies that target the root causes of LGS.
Submit a Request to Join the LGS Collaborative Research Network
Volunteer Community Network
LGS Foundation Volunteer Team Network
Interested in Becoming Part of our Volunteer Team?
Volunteers across the country have worked with the LGS Foundation to support our International community. We rely on people just like you to be successful in the work to be done. Volunteers make a huge impact locally, nationally and internationally through:
- Creating community and awareness in their local area
- Advocating for state and federal initiatives
- Sharing your personal story to educate others about living with LGS. Your journey shared in your own words inspires others to take action and come together
- Involvement in LGS Foundation fundraising campaigns to help expand our reach, research and support of those living with LGS and beyond
Advocacy in Action Network
The Advocates for LGS are comprised of LGS community members and volunteers who recognize the importance of the patient voice in advocating for government funding and support for LGS-related issues and causes. Advocacy can be done from the comfort of your own home, or in-person with your doctors and schools or local, state, and federal representatives. Your level of participation is completely up to you.
Volunteer Orientation
Our volunteer orientation educates volunteers about the LGS Foundation and is an introduction to how you can get involved in support of the LGS Foundation’s mission and vision. Become part of something rewarding through spreading awareness of LGS and empowering others to do the same.
Submit Your Application to Join the Volunteer Team
Private Support Networks
Membership is limited to parents and caregivers who are legally responsible for making medical decisions for the LGS patient.
Standing Together. Stronger Together. Support Group
This private support network and monthly virtual group meeting was created with the sole focus to discuss, listen, share resources, and comfort one another as we continue this journey because nobody should have to do this alone.
Dad to Dad Support Group
Hosted by dads, for dads – This exclusive group provides a safe space for male caregivers to connect, share and offer encouragement for each other.
Caregiver of Adults with LGS Support Group
Caring for an adult with LGS can be every bit as demanding as caring for a child with LGS, and the need for support is great. We invite parents and caregivers of adults with LGS to join us for discussion and support as we face the ever-changing challenges associated with LGS.
Parents of adolescents are also welcome to join the support group.
LGS Grupo de Esperanza (LGS Group of Hope)
El grupo de esperanza de LGS es un espacio seguro para reunirnos virtualmente y compartir nuestras historias. Únase a las cuidadoras Bertha Guillén y Michele Torres cada mes mientras nos escuchamos, acompañamos y apoyamos mutuamente como madres y padres de niños con LGS. Juntos somos más fuertes. Nadie debería caminar solo en este sendero. Todos son bienvenidos, ya sea que sea nuevo a LGS o tenga muchos años de experiencia. ¡Hay esperanza para nuestros niños!
Join the Online Global Caregiver Support Community to get access to Support Groups
Updated 10/17/24 (AM)