Sending Office: Honorable David Loebsack
Sent By:
Katie.Murray@mail.house.gov

Support Funding for the

Tuberous Sclerosis Complex Research Program (TSCRP)

** THIS IS A PROGRAMMATIC REQUEST. **

Members are required to submit the request online.

Deadline March 27, 2019

 

Dear Colleague:

Please join us in requesting a continuation of funding for the Tuberous Sclerosis Complex (TSC) research program in the fiscal year 2020 Department of Defense (DOD) Appropriations Act. 

TSC is a genetic condition that afflicts an estimated 50,000 Americans, causing tumors in the kidneys, lungs, liver, heart, eyes, skin, and brain.  Researchers have linked TSC to seizures, autism spectrum disorder and severe intellectual disability.  Research
on TSC is also having a significant impact on our understanding of traumatic brain injury and other medical conditions like cancer and diabetes, and the TSC program at DOD is critical to ongoing progress.

From fiscal years 2002 to 2019, Congress appropriated an aggregate of $83 million for the Tuberous Sclerosis Complex Research Program (TSCRP) at DOD.  This program has greatly benefited from significant bipartisan support from Congress and has competitively
awarded 160 grants to TSC researchers.  While this investment represents an important step toward gaining a better understanding of TSC, more must be done to expand research toward finding a cure.  In fiscal year 2018, only 23.2% of applications were funded
by the TSCRP.  A continuation of funding for the TSCRP is needed to support clinical studies to validate biomarkers and outcome measurements necessary to accelerate development of new therapeutic agents, understand the biology underlying the wide variation
in severity of manifestations among individuals with TSC, attract new researchers into this field of study, develop assays and animal models necessary for translating basic scientific discoveries into clinical treatments — and to ensure that strong scientific
proposals are not left unfunded. 

This is a programmatic request. Members are required to submit the request online to ensure the Appropriations Committee recognizes your support for the TSCRP.

If you would like to sign on to the below letter to Chairman Visclosky and Ranking Member Granger or if you have any additional questions, please contact
Taylor Hittle (Rep. Mullin) at 5-2701 or taylor.hittle@mail.house.gov, or Katie Murray (Rep. Loebsack) at 5-6576 or
katie.murray@mail.house.gov.

 

Sincerely, 

 

MARKWAYNE MULLIN                                            DAVE LOEBSACK

Member of Congress                                                   Member of Congress

 

—————————–

 

Dear Chairwoman Granger and Ranking Member Visclosky:

We are writing to support a continuation of funding for Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense (DoD) in the fiscal year 2020 Defense Appropriations Act.  

Tuberous sclerosis complex (TSC) is a genetic condition that afflicts an estimated 50,000 Americans, causing tumors in the kidneys, lungs, liver, heart, eyes, skin, and brain.  Researchers have linked TSC to seizures, autism spectrum disorder and severe
intellectual disability.  Research on TSC is also having a significant impact on our understanding of traumatic brain injury and other medical conditions like cancer and diabetes, and research at the TSCRP is critical to ongoing progress.

From fiscal years 2002 to 2019, Congress appropriated an aggregate of $83 million to the TSCRP.  This well-established program, which has enjoyed bipartisan support from Congress, awards grants competitively to cutting edge research proposals aimed at gaining
a better understanding of this complex disorder.  Research at the TSCRP complements – and does not duplicate – ongoing studies on TSC supported by the National Institutes of Health (NIH).  Coordination between NIH and DoD is managed by a trans-NIH working
group, led by the National Institute of Neurological Disorders and Stroke, with participation from eight separate Institutes, DoD and the Tuberous Sclerosis Alliance, representing the patient community.   

While this research has led to significant breakthroughs, far more is needed if we hope to find ways to more effectively treat those who suffer with TSC and prevent its occurrence in future generations.  In fiscal year 2018, there was only enough research
funding available to fund 23.2 percent of the research proposals received by the TSCRP.  Continued funding is required to support clinical studies to validate biomarkers and outcome measurements necessary to accelerate development of new therapeutic agents,
understand the biology underlying the wide variation in severity of manifestations among individuals with TSC, attract new researchers into this field of study, and develop assays and animal models necessary for translating basic scientific discoveries into
clinical treatments.

To date, patient organizations have invested more than $20.7 million in privately raised resources to the research effort.  Ongoing support is necessary to move this research closer to ultimately finding a cure for tuberous sclerosis complex.

We firmly believe that Congress should match these private sector commitments, and we urge you to appropriate funding necessary to continue the TSCRP in fiscal year 2020.

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