Advocates for LGS

Advocates for LGS is comprised of community members who recognize the power of using our voices to raise awareness of Lennox-Gastaut Syndrome (LGS)—in our personal lives, with healthcare providers, and at all levels of government.

Together, we strive to improve the lives of individuals and families affected by LGS by advocating for:

  • Increased government funding for epilepsy and rare disease research
  • Improved healthcare outcomes

  • Lifelong support for people living with LGS

What Advocates Do:

Advocates

As an Advocate for LGS, you’ll:

  • Learn, raise awareness, and share your LGS story with elected officials
  • Attend Rare Disease Week activities (virtual or in-person) on Capitol Hill
  • Participate in advocacy trainings
  • Meet with local, state, and federal representatives
  • Collaborate with fellow LGS Advocates throughout the year

  • Share advocacy calls-to-action with the broader LGS community

JOIN the Advocacy Team

Happening This Year for Advocates: 

Our Advocates for LGS team is stepping into a powerful year of learning, action, and visibility. Here’s what’s ahead:

📍 Rare Disease Week on Capitol Hill — Washington, DC (February 24–26, 2026)
This annual multi-day advocacy event brings rare disease advocates together on Capitol Hill to learn about federal policy, share community stories, and meet with members of Congress to advance rare disease priorities.

📚 Ongoing Advocacy Micro-Learnings
Bite-sized, practical trainings offered throughout the year to help advocates build confidence, skills, and momentum.

📝 IEP Advocacy Training – Launching March
Focused support on navigating the IEP process, understanding educational rights, and advocating effectively for students with LGS.

🎤 Advocacy Sessions at the LGS Foundation Conference
Learn, connect, and grow with advocacy-focused programming at the 2026 Family & Professional Conference.

📣 Rare Across America (RAA) – August
A coordinated month of advocacy actions focused on raising awareness and advancing rare disease issues across the country.

✨ Whether you’re new to advocacy or ready to deepen your impact, there’s something meaningful for you this year.

Advocacy Resources

Our Advocacy Efforts

Advocates for LGS: A Summer of Advocacy - August 2025

This summer, our dedicated LGS advocates met with legislators across six states as part of Rare Across America, sharing family stories and urging support for critical bills like the Give Kids a Chance Act and Accelerating Kids’ Access to Care Act.

From protecting NIH research funding to pushing for membership in the Rare Disease and Epilepsy Caucuses, our community made sure the voices of those living with LGS were heard. These efforts highlight the power of persistence, storytelling, and relationship-building in advocacy.

Read the full blog post 

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

Every year, LGS Foundation advocates travel to Washington, D.C. to share their lived experiences with lawmakers during Rare Disease Week. Why? Because real stories drive real change. For families impacted by Lennox-Gastaut Syndrome (LGS), advocacy isn’t optional—it’s essential. From fighting for access to care to pushing for vital research funding, our voices matter.

💜 Meet our incredible advocates, explore the key legislative issues we raised, and see how you can get involved.

Read the full blog post 

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 01/30/26 (KK)