Government Relations Program

Government Relations Overview

The Tuberous Sclerosis Alliance contracts with the Washington, D.C.-based firm, Cavarocchi, Ruscio, Dennis Associates, L.L.C., for assistance with its government relations programs.

Partner Domenic Ruscio and Senior VP Mark Vieth work closely with our Board, staff and grassroots volunteers to advance TSC research programs within the federal government by assisting with strategic planning, message development, initiating key contacts and providing counsel about the inner workings of the legislative process.

The TS Alliance is one of several non-profit health organizations represented by CRD Associates including the Alzheimer’s Association, the Cooley’s Anemia Foundation, and the Modell Foundation. The TS Alliance is a member of the Defense Health Research Consortium (DHRC) which is coordinated by Mark Vieth.

Our government relations efforts focuson increasing federal and state appropriationsfor TSC research, raising awareness, and collaborating with government partners to drive TSC research forward and improve clinical care and treatment options for individuals with TSC. As of December 2017, 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)

The TS Alliance also monitors legislative and policy issuesthat would impact the TSC community most recently healthcare reform and medication access issues. We work closely with other organizations, includingncluding, but not limited to:

the LAM Foundation, Epilepsy Foundation of America, the National Organization for Rare Diseases (NORD), Rare Disease Legislative Advocates (RDLA), the EveryLife Foundation for Rare Diseases, Global Genes, Research!America and ATS PAR. In 2016, the TS Alliance signed a three-year partnership with The ARC, which includes access to social service policy information and the ability to partner on key initiatives.

Although our government relations 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.

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 late February 2017.More than 100 members of the TSC community participated and asked their senators and representatives to sign onto Dear Colleague letters in support of the TSCRP. Many other advocates who were not able to travel to Washington, DC met with their senators and representatives back in their home states to make the case for continued funding. Representatives Ileana Ros-Lehtinen (R-FL) and Dave Loebsack (D-IA) sponsored the House Dear Colleague Letter for fiscal year 2018. The House letter garnered 160 signers. The Senate Dear Colleague Letter was sponsored by Senators Johnny Iskason (R-GA) and Chris Murphy (D-CT). The Senate letter closed with 24 signatures.

In FY2017, the TSC Research Program at the CDMRP received a $6 million appropriation, bringing the cumulative funding to $71million since 2002 as a result of our successful grassroots efforts. Funding for FY2018 is pending on Congress passing the FY2018 budget but is currently included in the House’s 2018 Defense Appropriations Act at $6 million.

For the past two years, the Senate version of the National Defense Authorization Act (NDAA) has had language inserted that would pose a direct threat to medical research funded by the DoD. In partnership with the DHRC, the TS Alliance and its advocates worked to ensure this damaging language was removed in conference committee and not included in the final version of the NDAA.

Despite this difficult political and fiscal environment, there was strong bipartisan support for the TSCRP in the House and the Senate. This support would not have been possible without the amazing efforts of our volunteers across the country who marched on Capitol Hill, met with their elected officials back home, and communicated electronically with Congress throughout the year about the importance of maintaining this invaluable program.

Although we have realized steadily progressive gains in funding over the last sixteenyears, the current federal budget situation is uncertain. Future success is by no means guaranteed. Going forward, it is imperative that we encourage all of our stakeholders to become involved in order to make our voices heard among all the competing interests.