$312 enrolls an individual with TSC in a natural history study enabling researchers to understand the progression of TSC over a lifetime.
Tuberous Sclerosis Alliance
The Tuberous Sclerosis Alliance (TS Alliance) is the only national voluntary health organization for the genetic disorder known as tuberous sclerosis complex (TSC). It is also the leading organization for the funding of medical research related to TSC. Such medical research has included the breakthrough discovery of two genes (TSC1 and TSC2) that are known to cause the disorder.
The TS Alliance was established in 1974 as the National Tuberous Sclerosis Association (NTSA), which it remained titled until 2000. Four mothers of children with TSC founded the organization in order to provide fellowship, generate awareness, pursue more knowledge and provide hope to those who share the common bond of facing the daily challenges of TSC.
Current Focus Today:
The TS Alliance is overseen by a board of directors, whose role is to preserve the integrity of the TS Alliance, set policy, and support and promote the organization. The staff implements policies and priorities through the delivery of programs and services. During its more than 35 years of existence and growth, the TS Alliance has expanded its mission to improve the quality of life for individuals and families affected by tuberous sclerosis complex through the stimulation and sponsorship of research, the development of programs, support services and resource information, and the development and implementation of public and professional education programs designed to heighten awareness of TSC.
Programs and Support Services:
The TS Alliance has an active government relations program through which it is striving to increase visibility of TSC in Congress and within the National Institutes of Health (NIH). The organization's goal is to engage government institutions in basic scientific and clinical research on causes and remedies for TSC. The TS Alliance builds networks through online services, conferences and volunteer outreach branches called Community Alliance to give the TSC-affected population a sense of community. Members and donors provide the necessary resources to meet the overall goals and objectives of the organization by their volunteer efforts and contributions.
Outreach and Advocacy:
The TS Alliance outreach and advocacy program collaborates with individuals and families in their efforts to obtain entitlements (social security and medical benefits), appropriate educational opportunities (placements and vocational services), and transitional issues, which include housing and community connections.
The professional and medical network of the organization provides a consensus regarding diagnosis and follow-up procedures. Members of the professional advisory board, both scientists and clinicians, make time available to provide resource information, discuss treatment with other medical practitioners, and provide their services to the TS Alliance in a voluntary capacity.