Your voice makes a difference!

$121 million appropriated for the TSCRP since 2002

$5.725 million to support clinical care and research at TSC centers in four states

120 volunteer advocates from across the country participated in the 2024 March on Capitol Hill

205 awards granted from TSCRP through FY2022

TSC Alliance government advocacy efforts focus on increasing federal and state appropriations for TSC research, raising awareness, and collaborating with government partners to drive TSC research forward and improve clinical care and treatment options for individuals with the disease. Although our government advocacy efforts continue year-round, activity peaks in February/March when we encourage our grassroots supporters to join us in Washington, DC to educate their members of Congress about TSC and why increased federal funding for TSC research is critically needed.

Federal advocacy

The TSC Alliance advocates for increased financial support of TSC initiatives through the following federal agencies:

  • The Tuberous Sclerosis Complex Research Program (TSCRP) at the Congressionally Directed Medical Research Program (CDMRP) administered through the Department of Defense (DoD)
  • The National Institutes of Health (NIH)
  • Centers for Disease Control (CDC)
  • Food and Drug Administration (FDA)
  • Social Security Administration (SSA)
  • Health Resources and Services Administration (HRSA)

To learn more, sign up for TSC Academy and access courses about tuberous sclerosis complex, TSC research, how research is funded and the advocate’s role in funding.

The TSCRP and the March on Capitol Hill

The TSC Alliance March on Capitol Hill to advocate for federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense’s (DoD) Congressionally Directed Medical Research Program (CDMRP) takes place annually. Total funding for the TSCRP has been $121 million since 2002.

FY2025 Dear Colleague Letters

State and local advocacy

Since 2014, state funding for TSC clinical care and research has been secured in Michigan, Missouri, Maryland and Alabama. Opportunities to advocate for state funding vary state-by-state.

Learn more about State and Local Advocacy by signing up for TSC Academy.

Awareness proclamations

Getting your mayor or even your state’s governor to declare May 15 as Tuberous Sclerosis Complex Awareness Day is one great way to ensure local officials not only know about TSC, but it can also help increase awareness in your community.  It’s a fairly simple process and to help you get started, download the sample TSC Global Awareness Day Proclamation Template and Request Letter.

Join our Government Action Team

The Government Action Team is our group of dedicated volunteers across the country who are the first to be informed about state and federal advocacy opportunities. Sign up to join our Government Action Team now!

Need more information?

Please contact Katie Smith at (800) 225-6872 or ksmith@tscalliance.org if you have any questions.