Legislative Advocacy
LGS Legislative Advocacy Efforts
The LGS Foundation is committed to keeping our community informed about legislative actions affecting the LGS and rare disease communities. We want to ensure you have the nonpartisan information and resources needed to advocate for your loved one effectively, and to let you know that you are not alone. By lending your voice to these advocacy efforts, you can help drive meaningful change, influence decision-makers, and improve the lives of those living with LGS.
Below are current legislative initiatives and calls to action. Your engagement—whether through contacting legislators, spreading awareness, or participating in advocacy events—can make a real difference. Together, we can push for policies that enhance research, improve access to treatments, and support families navigating the challenges of rare diseases like LGS.
Stay informed, take action, and be a part of the movement for change! #AdvocateForLGS
URGENT aCTION ITEMS
Medicaid is a vital program for many individuals with LGS and other intellectual and developmental disabilities. Both children and adults with LGS depend on Medicaid for essential healthcare, treatments, and other critical services that support their quality of life. Without it, vital care will vanish. If we don’t take action now, children and adults with disabilities could lose access to these services—some as early as April. Contact your legislators to share why Medicaid is important for your loved one and everyone with epilepsy. This is urgent as we expect Congress to vote on the updated budget very soon! Messages sent through VoterVoice.
On February 7, the current administration moved to cut billions of dollars in funding from the National Institutes of Health (NIH) and National Science Foundation (NSF) by placing an immediate cap on “indirect costs”. Indirect costs include infrastructure, facility maintenance, and staff salaries. These funds ensure that research can happen. This new policy will cause an immediate and massive funding shortfall at research institutions nationwide, forcing layoffs and jeopardizing critical scientific research. This change undermines years of financial planning at universities and research institutions, creating a devastating budget crisis overnight. NIH and NSF funding supports scientific progress and helps fuel the U.S. economy. Messages sent through VoterVoice.
ADDITIONAL ACTION ITEMS
A caucus is a group of bi-partisan legislators that join together to support a specific cause. This newly formed Epilepsy Caucus will help to promote legislation that will benefit the epilepsy community, so we need to get as many members as possible to join. Click below to check to see if your legislators are already members of the caucus. If not, you can use the form to send a message to ask them to join!
There is a new effort underway to create a National Plan for the Epilepsies. This legislation, if passed, would direct the federal government to develop a National Plan for Epilepsy to prevent, diagnose, treat, and cure the epilepsies and improve the well-being of people with epilepsy and their families. We support anything that would bring more attention, research and resources to the epilepsy community. Click the button below to contact your members of Congress to ask them to co-sponsor this important legislation (H.R. 1189 / S. 494).
This bill would reauthorize an existing program which allows drug companies to receive a Priority Review Voucher (PRV) in order to have an expedited approval process for a treatment that would benefit pediatric rare disease patients. This is important to our community because we want the companies working on new treatments to have every tool available to get those treatments approved as quickly as possible for our community. This legislation has broad bi-partisan support, but did not make it through the legislative process in 2024, expiring on December 20, 2024, despite a five-year reauthorization passing the House with bipartisan support. Recently, the Give Kids a Chance Act, was reintroduced by Representatives McCaul (TX) and Dingell (MI). The Give Kids a Chance Act would accelerate pediatric cancer treatments and expand access to life-saving therapies for children battling rare diseases as well as reauthorize the Rare Pediatric Review program. The Creating Hope Act of 2012 established the PRV Program to help expedite the development and promotion of drugs for diseases that disproportionately affect children. Since then, the PRV Program has incentivized the development of 58 new treatment options. Messages sent through Quorum.
STAY UP-TO-DATE & HELP ADVOCATE
The Advocates for LGS team is comprised of LGS community members who recognize the importance of using the voices of those impacted by LGS to raise awareness both in our personal lives and at all levels of government.
This page will be regularly updated with information on current legislation and easy ways you can take action.
Be sure to follow the LGS Foundation's social media channels and other nonprofits and healthcare organizations to get real-time updates on key legislative actions.
Keep an eye out on updates from organizations like EveryLife Foundation and NORD. These groups track policy changes and explain what they mean for patients, so you can better understand the impact on your family.
Check the Centers for Medicare & Medicaid Services (CMS), Food & Drug Administration (FDA), National Institutes of Health (NIH), and Centers for Disease Control & Prevention (CDC) for updates on policies, funding, and research initiatives related to rare diseases.
Knowing who represents you in Congress and following their stance on healthcare policies can help you stay ahead of potential changes. Many lawmakers share updates through newsletters and town halls.
Updated 02/25/25 (AM)