Government Advocacy

Join Our Government Action Team

If you haven’t done so, join our Government Action Team now! Also, be sure to use our Government Advocacy Toolkit for documents to help you schedule your appointments and other helpful items. 

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 Letter and TSC Global Awareness Day Proclamation Letter. 

March on Capitol Hill Update

The annual TS 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) took place in early March 2020. Total funding for the TSCRP has been $89 million since 2002. The FY20 appropriation was funded at $6 million. In FY21 we are requesting $8 million in funding for the TSCRP.

More than 100 TSC advocates participated in this year’s March on Capitol Hill and visited 367 House and 94 Senator offices to talk with them about the importance of funding for the TSCRP. The FY21 House Dear Colleague Letter was co-sponsored by Representatives Markwayne Mullin (R-OK) and Dave Loebsack (D-IA). The FY21 Senate Dear Colleague Letter sponsored by Senators Kevin Cramer (R-ND) and Jon Tester (D-MT) closed with 35 signatures.

The TS Alliance Government Advocacy Program

TS 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.  As of December 2014, state funding for TSC research has been secured in Michigan and Missouri. The TS Alliance advocates for increased financial support of TSC initiatives through the following federal agencies:

  • The National Institutes of Health (NIH)
    • Including National Center for Advancing Translational Science/Office of Rare Disease Research (NCATS/ORDR), National Institute on Neurological Disorders and Stroke (NINDS), National Cancer Institute (NCI), National Heart, Lung and Blood Institute (NHLBI), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Child Health and Human Development (NICHD), National Institute of Mental Health (NIMH) and National Human Genome Research Institute (NHGRI)
  • The Tuberous Sclerosis Complex Research Program (TSCRP) at the Congressionally Directed Medical Research Program (CDMRP) administered through the Department of Defense (DoD)
  • Centers for Disease Control (CDC)
    • National Center for Birth Defects and Developmental Disabilities (NCBDDD)
  • Food and Drug Administration (FDA)
  • Social Security Administration (SSA)
  • Health Resources and Services Administration (HRSA)

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.

Need More Information?

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