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Board of Directors
Cathy Evanochko, Chair Cathy Evanochko is one of the founding board members of the organization. In the days prior to the availability of the Internet, an article about Cathy’s family
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Research conferences
By bringing together researchers from different disciplines and representing basic, translational, and clinical science, TSC Alliance-hosted research conferences provide a truly unique space to foster collaborations, spark new ideas and
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Bcureful travel & lodging assistance
The Bcureful Travel Fund® at the TSC Alliance underwrites the TSC Travel and Lodging Patient Assistance Program, which is administered by the National Organization for Rare Disorders (NORD). This travel
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Neuropsychological issues in TSC
Approximately 45% to 50% of people with tuberous sclerosis complex (TSC) develop intellectual disabilities. However, profiles of strengths and weaknesses are highly variable person-to-person and are often very uneven within
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Mood and anxiety difficulties in TSC
The rates of mood and anxiety symptoms and disorders are very high in tuberous sclerosis complex (TSC), often arising in adolescence or adulthood. Difficulties in this cluster are often identified
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Eating and sleep difficulties in TSC
There is limited literature on eating-related difficulties and disorders in tuberous sclerosis complex (TSC), but difficulties with eating do present in individuals with TSC. Eating difficulties may be similar to
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Infantile spasms
Infantile spasms or epileptic spasms are severe seizure disorders that may affect infants with tuberous sclerosis complex (TSC). About 30% of children with TSC may start experiencing these seizures. The
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Kidneys
Most individuals (greater than 80%) with tuberous sclerosis complex (TSC) will develop some form of renal (kidney) disease during their lifetime. There are three renal disorders in TSC: renal cysts,
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Epilepsy/seizure disorders
One of the most common neurological features of tuberous sclerosis complex (TSC) are seizures. This feature occurs in 84% of individuals with TSC. In some cases, seizures can start as
News Item
New publication on International consensus recommendations for TAND
International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) from researchers from the TANDem project were recently published in the Journal of Neurodevelopmental Disorders.