Government Advocacy

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 2018.

More than 100 TSC advocates participated in this year’s March on Capitol Hill and visited 357 House and 84 Senator offices to talk with them about the importance of funding for the TSCRP. The FY19 House Dear Colleague Letter was co-sponsored by Representatives Ileana Ros-Lehtinen (R-FL) and Dave Loebsack (D-IA). The letter received a record amount of bipartisan support with 200 signatures, exceeding our previous high of 165 signers for FY17 in 2016. The FY19 Senate Dear Colleague Letter sponsored by Senators Johnny Isakson (R-GA) and Chris Murphy (D-CT) closed with a record 29 signatures. The previous high was 24.

On October 1, 2018, President Trump signed into law the fiscal year 2019 Defense Appropriations Act. I am pleased to inform you this legislation includes an appropriation of $6 million for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense (DoD). This most recent action brings the total appropriation for the TSCRP since fiscal year 2002 to $83 million!

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.

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. 

March on Capitol Hill

Save the Date: The next March on Capitol Hill is March 5-7, 2019.

The TS Alliance March on Capitol Hill is an annual event that takes place in late February or early March. This event is held in conjunction with the annual TS Alliance leadership training as well as the TS Alliance Board of Directors meeting. These events are open to the community for participation.

The March on Capitol Hill is a government advocacy event centered around securing continued federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP) within the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense (DoD). Each year, volunteers from across the country join together and meet with their senators and representatives to encourage them to sign on to a Dear Colleague Letter in support of the TSCRP.

We invite anyone interested in government advocacy to participate in this event whether it is from home or by coming to Washington, DC. If you are able to join us in DC, the TS Alliance will provide the following free of cost:

  • Training and coordination with others coming from your state
  • Special hotel room block pricing
  • Dinner Tuesday and Thursday

If you are unable to join us in DC, you can still participate by sending your Community Alliance representative who is coming to DC your personal story to take with them to your representatives and senators.

If you are interested in joining us on Capitol Hill, please contact Katie Smith at ksmith@tsalliance.org.

Need More Information?

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