Dna

The History of Tuberous Sclerosis Complex: A Rare Disease Moving Toward a Cure

By lizplibrary
  • TSC First Discovered

    TSC First Discovered

    French neurologist Desire-Maloire Bourneville first described the rare multi-system genetic disease now known as Tuberous Sclerosis Complex in 1869, leading to its original name "Bourneville's Syndrome." What is now known as TSC is a characterized by uncontrolled growth of benign tumors in the brain, kidneys, skin, and other organ systems. De La Sclerose en Plaques Disseminees (Paris). Retrieved from https://archive.org/details/delasclroseenp00bour/page/n9/mode/2up

  • TS Alliance is Formed

    Four mothers of children with TSC form the National Tuberous Sclerosis Association (NTSA), which eventually becomes the TS Alliance. Tuberous Sclerosis Alliance (2021), "Our Story," https://www.tsalliance.org/about-us/

  • TS Alliance Funds First TSC Research Grant

    The first research study on TSC set in motion a wave of research that would change the lives of many TSC patients.
    https://www.tsalliance.org/about-us/

  • First TSC Clinic Opens in Chicago

    The first clinic specific to the treatment of TSC opened in Chicago in 1986. Today, there are 76 TSC clinics in locations around the world. TS Alliance (2021), "TSC Clinics," Retrieved from https://www.tsalliance.org/individuals-families/tsc-clinics/

  • First TSC gene (TSC) is located on chromosome 9.

    In a research breakthrough, scientists locate the first of two genes causing Tuberous Sclerosis Complex. TS Alliance (2021), "Our Story," Retrieved from https://www.tsalliance.org/about-us/.

  • Second TSC Gene Located on Chromosome 16

    The TSC2 gene is located on chromosome 16.
  • NIH and Congress Begin to Fund TSC Research

    NIH and Congress Begin to Fund TSC Research

    Between 2002-2019, the National Institutes of Health (NIH) and the Congressionally Directed Medical Research Program (CDMRP) have funded over $347 million in research grants for TSC, helping to find a cure for TSC and also to advance research for related conditions such as epilepsy, autism, and cancer. Tuberous Sclerosis Alliance (2020). "Research," Retrieved from https://www.tsalliance.org/donors/research/
  • FDA Approves Drug for TSC Brain Tumors

    FDA Approves Drug for TSC Brain Tumors

    In 2010, the FDA approved the first drug specifically indicated for brain tumors in TSC. Afinitor shrinks the SEGA brain tumor found in many TSC patients.

  • FDA Approves Afinitor for Treatment of Seizures in TSC

    Studies found that the same drug that shrinks the SEGA brain tumor in TSC also reduces partial seizures in TSC patients. Food and Drug Administration (2018), FDA approves everolimus for tuberous sclerosis complex-associated partial-onset seizures, Retrieved from https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-everolimus-tuberous-sclerosis-complex-associated-partial-onset-seizures

  • TS Alliance Hosts World Conference

    Bringing together researchers, clinicians, patients and families from many countries, the first World TSC Conference enabled the sharing of information and research in the entire TSC community.