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ICARE Member Reports

ICARE Member Reports. Tuberous Sclerosis Alliance Mission: To find a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. The TS Alliance meets its mission by: Stimulating and supporting research on TSC;

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ICARE Member Reports

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  1. ICARE Member Reports • Tuberous Sclerosis Alliance • Mission: To find a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. • The TS Alliance meets its mission by: • Stimulating and supporting research on TSC; • Providing education, information and support to individuals with TSC and their families; • Educating health care providers and the public about TSC; • Supporting advocacy efforts on behalf of individuals with TSC and research programs at the National Institutes of Health and through the Department of Defense

  2. ICARE Member Reports: TS Alliance • Major topics of interest in epilepsy research • Role of the TSC1/2 genes and the mTOR pathway in epilepsy and in TSC • Basic mechanisms of infantile spasms • Underlying mechanisms of refractory epilepsy • Animal models of TSC with epilepsy and behavioral phenotypes • Drug screening programs for epilepsy in TSC • Clinical trials for epilepsy in individuals with TSC • Types of research support or other activities • TS Alliance Research Grant Awards • Drug Screening Program Awards • TSC Natural History Database (with >900 study participants) • Research Conferences and Workshops • TSC1/2 Variation Database

  3. ICARE Member Reports: TS Alliance • Resources available for shared use or other opportunities for collaboration • TSC Tissue Donation Program (through the NICHD Brain and Tissue Bank for Developmental Disorders at the University of Maryland) • TSC1/2 Variation Database • TSC Natural History Database (>900 study participants enrolled) • TSC Clinic Network • New TSC Drug Screening Program

  4. ICARE Member Reports: TS Alliance • Priorities for future activities • Public awareness campaign to identify more individuals with TSC • TSC Drug Screening Program • Increase research grant support for Postdoctoral Fellowships and Junior Investigators • Clinical Trial Network • Increase enrollment and use of TSC Natural History Database • Release White Paper on the Future of TSC Research

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