Tuberous Sclerosis Alliance
This organization has already been registered
Someone in your organization has already registered and setup an account. would you like to join their team?Profile owner : j*******i@t********e.o*g
Mission Statement
Founded in 1974, the Tuberous Sclerosis Alliance is the only national voluntary health agency dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. TSC is a genetic disorder characterized by seizures and tumor growth in vital organs such as the brain, heart, kidneys, lungs and skin. It is also the leading genetic cause of autism and epilepsy.
About This Cause
The Tuberous Sclerosis Alliance (TS Alliance) is the only national voluntary health organization in the United States dedicated to finding a cure for tuberous sclerosis complex (TSC), while improving the lives of those affected. TSC is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. TSC is the leading genetic cause of autism and epilepsy, and the aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. In 1974, four mothers formed the organization to provide fellowship, generate awareness, pursue knowledge and offer hope to those who shared the common bond of TSC. 2014 marks the TS Alliance’s 40th anniversary, and these goals still remain the driving force of the organization. One in 6,000 infants are born with TSC. An estimated 50,000 Americans and 1 million individuals worldwide have TSC. An estimated two-thirds of those affected by TSC have no prior family history of the disorder. Care for an individual with TSC often requires ongoing treatment that involves five or more medical specialists, speech, occupational and other therapists, as well as those skilled in the proper care, educational and emotional development of a medically and cognitively challenged individual. Although some people with TSC experience developmental delays, learning disabilities and autism, many people with TSC lead independent, healthy lives and enjoy challenging professions, such as doctors, lawyers, educators and researchers. Even these individuals, however, turn to the TS Alliance for guidance as a new challenge in their health may appear. Named as a 2014 Top-Rated Nonprofit by GreatNonprofits and with a professional staff of 14, the TS Alliance is governed by a Board of Directors comprised of people affected directly by the disease, such as parents or adults with TSC, as well as business professionals. The staff and board are also supported by an army of more than 2,000 volunteers who all work together to improve the quality of life for every individual and family affected by TSC by focusing on three main pillars: 1. Outreach and Education 2. Advocacy 3. Research Since our humble beginnings, the TS Alliance has funded more than $17.4 million in support of basic, translational and clinical research. Because of our advocacy for research and promoting young investigators, we funded and cultivated a new generation of senior scientists who today receive generous funding from sources such as the National Institutes of Health and the Department of Defense Congressionally Directed Medical Research Program. Due to the strength of our grassroots volunteers, more than $171 million has been spent on TSC research over the past 12 years from these important sources. In our quest to find a cure, funds provided by the TS Alliance over the last decade have contributed to a number of significant scientific breakthroughs. TS Alliance-sponsored research helped support the identification of the two genes that cause TSC, developed a genetic test and initiated the first clinical trials in TSC. Today, because of this very early research and basic science understanding of the disease, there are currently two FDA-approved indications for TSC – one for the treatment of brain tumors and the other for the treatment of kidney tumors common in TSC. Now more than ever hope is on the horizon for therapies that will greatly improve the lives for all those with TSC. Research to find a cure for TSC offers hope for millions of people, not just those affected, because it is truly a linchpin disease. Unraveling the mysteries of TSC may have far-reaching effects on the general understanding of epilepsy, autism, diabetes and even breast and kidney cancer.