Investment to Accelerate Research
Although significant advances have been made in the diagnosis and treatment of TSC in just the last decade, the vast majority of children and adults with TSC remain challenged with inadequately controlled epilepsy, life-long neuropsychiatric issues, and/or progression of life-threatening tumor-like growths.
Research today is advancing at a pace unimaginable just a few years ago, and continued investment is essential to build upon past successes. TSC is considered a linchpin disease, sharing similar features with other common diseases, including autism, epilepsy, and cancer. With so much at stake and so much opportunity, the time for action is now.
The Bcureful Travel Fund at the TSC Alliance
In December 2019 Bcureful and the TSC Alliance announced plans to formally combine efforts by establishing the Bcureful Travel Fund at the TSC Alliance. Donations to the fund help provide patients diagnosed with TSC with financial assistance for travel and lodging related to participation in a clinical trial or furtherance of treatment for the disease. The TSC Travel and Lodging Patient Assistance Program is administered by the National Organization for Rare Disorders (NORD). Anyone in the TSC community needing travel fund assistance can find out more by contacting NORD at (203) 616-4320 or TSCTravel@rarediseases.org.
Frost Clinical Research Legacy Fund
Michael and Janie Frost have both devoted their careers and lives to helping individuals and their families affected by TSC. They established the Frost Clinical Research Legacy Fund to support research focused on TSC-Associated Neuropsychiatric Disorders (TAND) and Lymphangioleiomyomatosis (LAM). The objectives of the fund are to broaden the diversity of biosamples through mobile blood collection and focused equity, diversity, and inclusion initiatives, expand the use of data and biosamples by a broader diversity of researchers, accelerate the development of patient-centered outcome measures in clinical trials and facilitate preventative treatments, and drive analyses of data and biosamples to address hypotheses.
Steven Sparagana Legacy Fund
The Steven Sparagana Legacy Fund was created in honor of Steven Sparagana, MD’s retirement in July, 2024. The fund will provide an ongoing source of revenue in support of the TSC Natural History Database and Biosample Repository as a tribute to his contributions to the creation and ongoing success of these invaluable tools.
The Lauren Krinsky Research Fund
The Lauren Krinsky Family Research Fund for a Cure was created in honor of the contributions made by the Krinsky Family to the TSC Alliance. Gifts to this fund will be invested in research toward improving treatment of TSC in individuals of all ages. Contributions will support projects to eliminate—not just shrink—life-threatening tumors in the kidneys, lungs, and brain. This fund will also support projects to test drugs to improve the neuropsychiatric aspects of TSC that impact daily quality of life. Furthermore, contributions to this fund will go toward collecting biospecimens and high-quality clinical data to be used by researchers to learn why the effects of TSC vary greatly from person to person and how we can tailor specific treatments to each individual.