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Mission: To find a cure for tuberous sclerosis complex (TSC), while improving the lives of those affected.
Vision: To bring about a day when no one has to endure the devastating effects of TSC.
We will accelerate the progress in TSC research through federal funding, a database, TS Alliance funded research, collaborations and a clinical network.
- Federal Funding: Increase federal funding of research from diverse sources through advocacy to an annual minimum of $30 million.
- TS Alliance Funded Database: Support the TS Alliance’s Natural History Database to improve access to clinical research data and promote increased interest in TSC research.
- TS Alliance Funded Research Grants: Ensure optimal investment of TS Alliance research funds, while expanding scope and depth of TS Alliance research program.
- Collaborations: Be the catalyst for collaborations with investigators in industry, academia, government and other organizations to promote basic, translational and clinical TSC research.
- Clinical Network: Facilitate and foster a clinical network that supports new therapies and critical clinical trials.
We will support quality TSC care, and empower consumers in diverse communities to access it.
- Identify TSC Community: Increase the number of people served by the TS Alliances to 16,000 while actively fostering diversity and lifespan considerations.
- TSC Clinics: Ensure individuals with TSC and families/caregivers have accurate and updated information about TSC clinics and services.
- Community Alliances: Enhance community alliance structure for education and constituency support.
- Lifespan support: Promote research, educational advocacy, and additional support for individuals with TSC across their lifespans.
We will educate the public about those affected by TSC and the benefits of increased investment in TSC research for related disorders such as Autism, Epilepsy, and LAM, and mobilize them to join and support our programs in order to increase annual revenue from $3.4 million (FY11) to $4.5 million by 2016 from both philanthropic and non-philanthropic sources.
- Communications Plan: Rally and identify allies, our story and our energy to increase awareness and funds for TSC research and programs. Create increased awareness and support through an integrated communications system designed to broaden the TS Alliance's constituency and outside resources.
- Broad Advocacy: Increase and broaden our advocacy for those affected by TSC with related advocacy groups, healthcare professionals, pharmaceutical companies, consumers, educators, media, policymakers and regulators.
- Revenue Goal: Increase annual revenue to $4.5 million to support research, outreach, and advocacy programs and services from both philanthropic and non-philanthropic sources.
- Endowment: Coordinate with TS Endowment Fund Board to grow the endowment through planned giving.
We will build organizational unity and capacity to strengthen the economic viability and growth of the TS Alliance in order to achieve our mission.
- Resource Management: Build and strengthen the integrity of the organization’s fiscal health by improving operational efficiencies and staff and volunteer competencies, while ensuring that the TS Alliance’s corporate reputation remains above reproach in order to meet our goals.
- Organizational Structure: Promote sound governance and management capabilities with a Board and committee structure that best serves constituents; a thriving Community Alliance structure with appropriate collaboration; and a staff size and structure with professional support resources in order to meet our goals.
The following reports are downloadable in PDF formats:
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