Advocates for LGS
Advocates for LGS is comprised of LGS community members who recognize the importance of using the voices of those impacted by Lennox-Gastaut Syndrome to raise awareness both in our personal lives and at all levels of government.
In doing so, we hope to improve the lives of our community by advocating for government funding, improved healthcare outcomes, and lifelong support for individuals with LGS.
Advocates for LGS:
- Desire to learn, raise awareness, and share their LGS story with elected officials
- Attend Rare Disease Week activities (virtual or in-person) on Capitol Hill
- Participate in advocacy training
- Meet with local, state, and federal representatives
- Meet with other LGS Advocates as needed
- Share advocacy calls-to-action with the LGS community
Happening This Year for Advocates:
Talking To Your Healthcare Provider Training – at the Family & Professional Conference, July 2024
Rare Across America – August 5-16, 2024
IEP Advocacy Training
(more information coming soon)
Our Advocacy Efforts
LGS Workshop: Advocating for a Better Future for Your LGS Loved One
Rare Disease Week on Capitol Hill - February 25-28, 2024
Every year on the last day of February, the rare disease community unites as one to observe Rare Disease Day. February is a rare month with only 28 days and this February was ultra rare with the extra day, February 29th, a day that only occurs once every four years.
Once again, as we did in 2023, advocates from the LGS Foundation made our way to Washington, D.C. to participate in Rare Disease Week on Capitol Hill hosted by the EveryLife Foundation for Rare Diseases. It was here that we learned of current legislation aimed at supporting initiatives impacting the rare disease community.
Rare Disease Day - February 29, 2024
February 2024 - Request for increased federal investment for research into the epilepsies.
Read the letter here - Epilepsies Action Network Biden OMB Letter
July 2023 - LGS Advocates Are Raising Their Voices
Six months after we took the nation’s capital by storm for Rare Disease Week on Capitol Hill, the LGS Advocates were at it again in their local communities as part of Rare Across America, organized and hosted by the EveryLife Foundation for Rare Diseases.February 2023 - Rare Disease Week on Capitol Hill
Six LGS caregivers joined efforts with the EveryLife Foundation for Rare Disease Week (RDW) on Capitol Hill. Our advocates learned about policy proposals impacting the rare community, shared their voices with members of congress, and networked with other rare disease patients and caregivers.For more information about advocacy efforts email info@lgsfoundation.org
Updated 11/19/24 (KK)