Basic Organization Information
National Tuberous Sclerosis Association Inc
- Also Known As:
Tuberous Sclerosis Alliance
- Physical Address:
Silver Spring, MD
- Web URL:
- NTEE Category:
H Medical Research
H01 Alliance/Advocacy Organizations
G Disease, Disorders, Medical Disciplines
G01 Alliance/Advocacy Organizations
- Year Founded:
- Ruling Year:
- How This Organization Is Funded:
TS Alliance Endowment Fund - $202,000
Harold Simmons Foundation - $175,000
Wenthworth Charities - $125,000
The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected.
Ms. Kari Luther Rosbeck
Kari Luther Rosbeck, President and CEO, was formerly the Executive Vice President, and has been with the TS Alliance since June 2001. During her tenure as President and CEO since November 2007, the TS Alliance established a Drug Screening Program to foster collaboration with industry and academia in order to move treatments for tuberous sclerosis complex (TSC) forward in a more expedited way, and played an active role in the development of the first clinical trial for neurocognition in TSC. In just the past four years, there have been FDA approvals for two therapies to combat infantile spasms, the most catastrophic form of epilepsy that up to 40% of infants with TSC may experience, and two approvals of a drug with a TSC indication, specifically SEGA and AMLs associated with TSC. Because of Kari’s leadership, the organization has taken an active role in educating the TSC community about clinical trials to diminish the time for recruitment.
Ms. Rosbeck previously oversaw the national volunteer outreach program and was responsible for fund development. She developed and implemented a vast national network of more than 30 volunteer branches called Community Alliances; increased volunteer participation from 90 individuals to more than 2,000; and through her involvement in special events and major gift fundraising, helped increase the annual revenue by more than 50%. Rosbeck has been involved in nonprofit fundraising and volunteer management for more than 20 years.
It is a tremendous honor to work on behalf of the TSC community. Over the past 39 years, incredible strides have been made in the fights against TSC. The TS Alliance has served as a catalyst – first with the discovery of the TSC genes; second, the genetic pathway; and third in bringing together the research community for research conferences that have led to the clinical trials taking place today and two FDA-approved indications for TSC. Of the 6,000 rare diseases, only 200 have approved treatments; TSC is one of them. These advances have only been made possible through the generous partnership of compassionate individuals, foundations and corporations with a vested interest in important scientific breakthroughs.
For the first time, evidence exists that research will help not only the newly born and the newly diagnosed, but will also have an impact on the lives of those living with TSC today. We hope you will join us to Unlock the Cure.
Board of Directors
Highest Paid Employees & Their Compensation
Highest Paid Employee data is not available for this organization.
Every dollar spent finding cures and treatments for tuberous sclerosis complex (TSC) can bring about quantum leaps in the cures for autism, epilepsy and cancer – diseases that touch most everyone all of us know and love.
For more in-depth information about this organization's impact, view their Charting Impact Report