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 TS Alliance
Update on March 26, 2020: The Bcureful Travel Fund has donated $75,000 to National Organization for Rare Disorders (NORD) to administer the TSC Travel and Lodging Patient Assistance Program. Since January 2020, 49 families have been awarded $63,000 in just the first three months of the year. NORD recommended that we pause the Patient Assistance Program during the COVID-19 emergency and while most appointments are being conducted via telehealth. This gives the TS Alliance time to fundraise and reopen the program this summer to help as many families as possible, especially after we have all be sheltering in place. The TSC Travel and Lodging Patient Assistance Program will be available for visits and clinical studies at TSC Centers of Excellence. If you would like to make a donation to the Bcureful Travel Fund, you can do so at the link below.
In December 2019 Bcureful and the Tuberous Sclerosis Alliance (TS Alliance) announced plans to formally combine efforts by establishing the Bcureful Travel Fund at the TS 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.
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 TS 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.