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:

Advocates

  • 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

JOIN the Team

Happening This Year for Advocates: 

February 24-26, 2025 – Rare Disease Week on Capitol Hill 

February 28, 2025 – Rare Disease Day 

Advocating with Your Healthcare Team (Training) 

Individualized Education Plans (Training) 

August 2025 – Rare Across America 

(more information coming soon) 

Our Advocacy Efforts

LGS Workshop: Advocating for a Better Future for Your LGS Loved One - July 2024

Learn about healthcare and IEP/person-centered planning advocacy in this workshop led by our Director of Family Support, Jen Griffin. 

Watch the Workshop Recording 

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, advocates from the LGS Foundation made our way to Washington, D.C. to participate in Rare Disease Week on Capitol Hill. It was here that we learned of current legislation aimed at supporting initiatives impacting the rare disease community.

Learn more about our efforts

Rare Disease Day - February 29, 2024

Rare Disease Day is observed every year on February 28th (or 29th in leap years)—the rarest day of the year! This day raises awareness for the thousands of rare diseases affecting millions worldwide.

Learn More

Request for increased federal investment for research into the epilepsies - February 2024

As a community of clinicians, researchers, and thought leaders collaborating on many fronts alongside people with the epilepsies, family members, caregivers, and advocates, to improve epilepsy healthcare and outcomes, we respectfully request increased federal investment for research into the epilepsies, as part of your FY 2025 budget proposal. Collectively, the epilepsies are among the most common conditions affecting the brain and range in impact from profoundly debilitating to manageable with therapy. More significant government investment is needed to advance understanding of these various epilepsies, develop more effective and targeted therapies, and establish new, transformative models of patient care.

Read the full Epilepsies Action Network letter

LGS Advocates Are Raising Their Voices - July 2023

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.
 
 

Rare Disease Week on Capitol Hill - February 2023

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 01/17/25 (KK)