Petition to Increase TSC Research Funding

The petition

Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different vital organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Epilepsy, autism, learning and behavioral problems are often found in people with TSC.

At least two children born each day will have TSC. Current rough estimates place TSC-affected births at one in 6,000. Nearly 1 million people worldwide are known to have TSC, with approximately 50,000 in the United States. TSC is as common as Cystic Fibrosis and Lou Gehrig's Disease but virtually unknown by the general population.

Two genes have been identified that can cause TSC. Only one gene needs to be affected for TSC to be present. Researchers are trying to determine what these genes do and how a defect in these genes causes TSC.

Substantial investments have been made in tuberous sclerosis complex research at both the National Institutes of Health (NIH) and the Department of Defense (DoD) for which we are thankful. Thanks to this investment, researchers have made enormous breakthroughs that have a significant impact on our understanding not only of TSC but of more prevalent conditions like autism, epilepsy, cancer and diabetes. But more needs to be done.

Please sign this petition, which will be shared with Members of Congress, in support of the following:

--The Tuberous Sclerosis Alliance supports a 6.7% increase for the NIH to help fund new research into finding a cure for TSC.

--We also urge the DoD subcommittee to support an appropriation of $10 million for the Tuberous Sclerosis Complex Research Program, the world's largest single research program specifically devoted to TSC research.

--We also support funding for a new program at the Centers for Disease Control to help us better understanding the national prevalence of TSC and train individuals to better diagnose this complex disorder.

Sign the petition

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