To create a future where everyone affected by tuberous sclerosis complex can live their fullest lives.

2024 – 2028 Strategic Plan

Throughout 2023, members of the TSC Alliance Board of Directors, staff and community worked diligently and thoughtfully to write a five-year strategic plan. This plan was based on community needs and input, informed by a comprehensive online constituent survey and in-person discussions.

Below is a summary of the new plan. Read our more detailed Objectives, Goals, Strategies and Measurements (OGSM).

Objective The TSC Alliance improves quality of life for everyone affected by tuberous sclerosis complex by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support.
Approved by TSC Alliance Board of Directors:  October 13, 2023
Goals Accelerate Research Improve Access and Quality of Care Support and Empower Constituents Educate and Mobilize to Increase Investment Build and Strengthen Organization
Strategies Better understand and stratify disease.

Increase diversity of technologies entering clinical trials.

Increase innovative research.

Expand healthcare access.

Improve quality and comprehensiveness of healthcare.

Build evidence base to support updates to best practice guidelines for TSC clinical care.

Develop a more collaborative and inclusive volunteer network to mentor the next generation.

Strengthen the relationship between healthcare providers and community members at a local and regional level.

Foster international relationships and development of resources to better serve the worldwide TSC community.

Launch public phase and complete capital campaign to enable growth of research platform through partnerships with corporations, foundations and individuals.

Educate the community and other donors about the role and opportunities associated with Endowment, including estate planning and gift annuities.

Increase annual unrestricted revenue.

Broadcast TSC information, TSC community stories and research accomplishments to increase awareness and position the TSC Alliance as a leader in the rare disease space via wide-ranging, strategic communications efforts using internal tools such as news releases, social media outreach and digital platforms.

Adhere to financial management best practices for efficient and effective operations consistent with watchdog organization guidelines while maintaining appropriate infrastructure for organizational growth.

Maintain database of current, reliable information of individuals with TSC, their families and TSC Alliance supporters complying with GDPR.

Grow and maintain board of directors reflecting the diversity of our constituency and with skill sets needed to realize the strategic plan.

Invest in professional development to cultivate the next generation of staff team leadership and drive results.


Theory of Change

At the same time, the strategic plan working group updated the TSC Alliance’s Theory of Change (TOC), which helps us articulate and evaluate our actual impact on the daily lives of everyone we serve.

In general, a TOC is a specific type of methodology for planning, participation and evaluation used in the philanthropy, not-for-profit and government sectors to promote social change. Our TOC defines long-term goals and then explains how a group of early and intermediate accomplishments sets the stage for producing long-range results.

Read our Theory of Change.

Strategic Plan Progress Reports