Advocates for LGS: A Summer of Advocacy

The Advocates for LGS had a busy summer. With the recent passage of HR 1 (The One Big Beautiful Bill Act), the healthcare landscape has shifted dramatically, leaving an uncertain future for many of our loved ones with LGS. Now more than ever, it is critical that we speak up on behalf of those who cannot speak for themselves.

While many caregivers are overwhelmed and unable to attend legislative meetings, our small but dedicated team of advocates has stepped forward, sharing their stories and putting an LGS face on issues that directly impact our community.

Each August, when members of Congress return to their home states during the Congressional Recess, advocates have an opportunity to meet with them directly. This year, representatives from New Hampshire, Kansas, Pennsylvania, Illinois, California, and Indiana connected, either in person or virtually, with their legislators to discuss key legislation and share family stories.

These meetings were part of Rare Across America, an event organized by the EveryLife Foundation for Rare Diseases. EveryLife provides training, coordinates meetings across states, and equips advocates with tools to tell their stories persuasively. A key resource is the Legislative Scorecard, which helps advocates identify whether their legislators already support pending bills or are members of the Rare Disease Caucus.

This year’s legislative priorities included:

In addition, many LGS advocates also urged their members to join the Congressional Epilepsy Caucus and co-sponsor the National Plan for Epilepsies.

Highlights from the States

  • New Hampshire: Advocates Kurt Oberhausen and Jamie Riley reported strong interest in protecting NIH funding. Rep. Maggie Goodlander’s staff provided generous time for discussion. This is important to note as members and their staff have very tight schedules. It’s a good sign when they provide ample time for discussion.
  • Kansas: Advocate Bertha Guillen met with Rep. Sharice Davids’ staff, who advised advocates to bring compelling data alongside personal stories as legislators are particularly responsive to numbers.  She also recommended offering concise soundbites that legislators can easily share with colleagues as they pass one another in the hallway, on their way to another meeting.
  • California: Knowing that Rep. Salud Carbajal is a great champion for people with disabilities, I offered myself as a resource for him and his team. I can reach out to my fellow advocates across the country, and we can help legislators build support among their peers in other states. 
  • Pennsylvania: Advocate Diana Smaglik often brings her son Billy to meetings, underscoring the power of showing the human face of LGS. She also applauds her other son, Gabriel, a passionate self-advocate with special needs who has been very active in connecting with his representatives. Go Gabriel!!
  • Indiana: Advocate Amber Mathas, Senior Director of Operations at the LGS Foundation, committed her voice to the LGS community she has come to love. In her follow-ups, she modeled effective advocacy by politely pressing staffers for clarity on co-sponsorship, demonstrating that persistence paired with civility is key to building long-term relationships. 

Our members know that their constituents are taking time from their busy lives to meet with them, and they know that the constituents deserve answers. As advocates, we do ourselves a disservice if we pick a fight or put up barriers. It’s part of the advocate’s job to build a relationship with their representatives. This isn’t a one-time thing, and they need to know that we’ll be back.

Looking Ahead

At the close of Rare Across America, LGS advocates reflected on their experiences. While we felt heard, concerns remain about the fragile state of medical research funding and healthcare protections for vulnerable populations. 

Our next major opportunity will be Rare Disease Week on Capitol Hill in February 2026, held in conjunction with Rare Disease Day (February 28th). By then, the impact of recent healthcare changes will become clearer. 

A Call to Action

I encourage the LGS community to consider becoming an advocate. You can learn more about the Advocates for LGS and how to join us here. It often seems like a monumental task. People say to themselves, “I don’t know a lot about politics, so I can’t be an advocate.” – to which I say – “You don’t need to know anything about politics because advocacy starts with what you already know, your story.”

By sharing our lived experiences, we show lawmakers the real-world impact of their decisions. The quality of life for our loved ones with LGS depends on how policymakers prioritize people with special healthcare needs and disabilities. By speaking up, we not only influence policy but also remind legislators of the human stakes behind every vote, and what that vote says about them.

-Written by Jennifer Griffin, LGS Foundation Director of Family Support 

Updated 09/09/25 (KK)